What’s going on?: I posted my latest results here... - Thyroid UK

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What’s going on?

Murphysmum profile image
21 Replies

I posted my latest results here last week and off the back off those I have increased my T3 dose by 5mcg to 15mcg per day.

I’m struggling though. I had been having horrible feelings of pressure in my neck and head and those have gone a.most immediately I took an extra dose - yay! However, I’m now feeling breathless and have that odd, weak trunk feeling again. I haven’t had these for months.

Is this just a readjustment period and these things might disappear in a few days/weeks? I’m still supplementing with b vits, magnesium and d, and I’ve started taking my iron with a betaine hcl to see if my ferritin will improve.

I didn’t feel this way starting on T3 a couple of months ago.... is it possible that my ferritin being low causes an intolerance to T3? I just don’t understand why I felt much better, then the muscle weakness appeared again so I increased a couple of days ago, and now I feel rubbish again. I can’t get my head around this!

I’ll post my previous results for background, thank you 😊

Jan 19: ferritin 43ug/l (13-150ug/L)

Folate 13.46ug/L (>3.89)

Active B12 71.6pmol/L (37.5-188pmol/L)

Vit D 72 (50-175nmol/L)

April 10th (4 weeks after dropping to 125mcg levo and intro 10mcg T3)

TSH 0.02 (0.27-4.2mIU/L)

Ft3: 6.15 (3.1-6.8pmol/L)

Ft4: 18.8 (12-22pmol/L)

May 21st (tested due to recurrence of muscle weakness/head pressure)

TSH 0.036 (as above)

FT3: 4.99 (as above)

FT4: 18.7 (as above)

Now taking 125mcg T4 at bedtime, 5mcg T3 at 6 am, 2pm and bedtime

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Murphysmum profile image
Murphysmum
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21 Replies
SlowDragon profile image
SlowDragonAdministrator

Your ferritin is likely still a problem

Breathlessness and low iron pretty common

Vitamin D, folate and B12 weren't brilliant in Jan either

Have you tested any of these since then?

Murphysmum profile image
Murphysmum in reply to SlowDragon

I haven’t tested them since then but have continued supplementing. (I have been a wee bit lax sometimes but only occasionally)

SlowDragon profile image
SlowDragonAdministrator in reply to Murphysmum

Personally I test vitamins every 3 months and supplement religiously everyday

Murphysmum profile image
Murphysmum in reply to SlowDragon

Yes, I’ve given myself a slap on the wrist! 😂

I really need to write myself a schedule - as Judith says it’s tricky trying to fit everything in so sometimes I miss some 😬

SlowDragon profile image
SlowDragonAdministrator in reply to Murphysmum

Getting a weekly pill dispenser for vitamins recommended

Plus one for Levothyroxine

And separate one for Liothyronine

shaws profile image
shawsAdministrator

I have read that when taking a combination of T4/T3 that a 3:1 or 4:1 gives the best results.

i.e. 75mcg T4, 25mcg T3 and so on.

Of course many take different doses of T4/T3.

Judithdalston profile image
Judithdalston

Some finding adding T3 easy, others not. Your Jan. vits/ mins levels were poor, do you know they are now optimal, as from personal experience such low levels can be problematic and symptomatic? Have you tried adding vit C with your ferrous fumarate to increase absorption? Rather than stagger the 5 mcg of T3 throughout the day some suggest the ‘flooding’ approach ie take all T3 with your levo. at night. While I found it was far too difficult to take T3 2-3 x daily, plus taking iron, folate, vit D, and b12 and selenium, magnesium, zinc etc as well other other medications and food/drink to get the appropriate time gaps away from each other eg 4 hours gap around iron supplements and thyroid meds. Another problem with adding T3 is whether to remove some levo. or not, and how much, as we are all different. I did as often advised on this forum ‘swopping’ equivalent of 25 mcg levo. for 10 mcg T3 ( infact 50 mcg levo. for 25 mcg T3), but my FT3 went down further! So many variables that can effect bloods and how we feel. Have you considered keeping a diary of how you feel, dosing, bloods, bp, pulse, basal body temp....can be useful to add or subtract ‘meds’?

Murphysmum profile image
Murphysmum in reply to Judithdalston

I may try taking 10 mcg in the morning then and 5 in the afternoon- I must admit I’m not finding any benefit from the evening dose but it’s early days.

Funny, I was just thinking about the diary...

SlowDragon profile image
SlowDragonAdministrator in reply to Murphysmum

Personally I think you need to give any new schedule time to work.....minimum of 8 weeks....12 weeks might be better

Murphysmum profile image
Murphysmum in reply to SlowDragon

Agreed. Certainly levo changes took me 12-15 weeks to settle.

Problem is, I go on holiday in three! 🙈

Murphysmum profile image
Murphysmum

I have added in an extra 5mcg T3 to my 125mcg levo.

As Judithdalston says, I’m aware of the “add in T3, reduce levo” advice.

I didn’t reduce levo this time as it has remained stable while my T3 has dropped (I assume because the first bloods probably didn’t allow time for the levo to be out of my system, ie after about 4 weeks)

Should I remove 25mcg levo?? What would happen if my T4 drops? Do I just keep adding and subtracting until I feel well??

Murphysmum profile image
Murphysmum

SlowDragon Judithdalston shaws

A question!

I increased my T3 dose to 15mcg per day - 10 around 6 am and 5 around 3pm) and the head pressure etc has gone but I’m still not feeling as good as I did a few weeks into starting T3.

I’m considering increasing again to 20mcg/day but as my T4 levels were fine, do I need to reduce my dose from 125 to 100mcg or keep it the same? Also, do I need to retest at 15mcg/day or do I have room to try increasing first?

I’m still getting some odd things - some palpitations, slight numbness, and a distinct lack of motivation which is a key indicator for me! All these things disappeared initially on T3.

Thanks guys 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Murphysmum

Personally I always hold any change for minimum of 12 weeks.....changing too quick is hopeless

Frequently feel worse weeks 5-7 after any change....then very slow improvement

That's a long gap between 3pm and 6am

Have you tried 3 x 5mcg - 6am, 2pm and 10pm

I would try that before considering adding more T3, certainly while on holiday

Murphysmum profile image
Murphysmum in reply to SlowDragon

I’m did try that first for a few nights but I couldn’t sleep (which isn’t something I’ve ever struggled with 😂)

I may try it again.... I just feel that when I started on T3, about a week in I felt great and my main issue the muscle weakness, disappeared.

I’ve been on 15mcg for about 10 days now and, nothing!

SlowDragon profile image
SlowDragonAdministrator in reply to Murphysmum

Perhaps try T3 at 5am, 1pm and 8pm them (though that's tricky re food and T3 times)

Are you working on low ferritin levels

All four vitamins need to be optimal

Murphysmum profile image
Murphysmum in reply to SlowDragon

Yep.

Now taking everything but with a betaine hcl to see if that helps absorption. Don’t know what else I can do. Everything else is ok/optimal without much effort - ferritin 🙄!

I started taking the 10mcg first thing as I felt knackered by 2/3pm. I’ve been moving the afternoon dose around - anywhere between 2&4 but doesn’t seem to make any odds. That’s why I wondered if I actually needed more.

I’ll persevere though and maybe throw in a wee bit more levo whilst I’m on hols... it usually gives me a short-lived boost!

shaws profile image
shawsAdministrator in reply to Murphysmum

I've always taken my dose once daily. I have a life as I don't have to keep remembering to take it or that stomach is empty and I doubt it could be the exact time each day. I shall give you a link which might be helpful. Read 'Safely getting well on Thyroid hormones'. This is an excerpt:-

A trial of T3 therapy is then warranted.During the trial, the patient carefully progresses through metabolic rehab using plain T3. The method of adjusting her dose of T3,and the safety monitoring she undergoes, are based on our experiences with hundreds of resistance patients and our scientificstudies of those patients.[36][38][92][93][94][135][137][188][189][292][403]We want to emphasize that our patients use plain T3—not sustained-release or timed-release T3. They take their full dose of T3on an empty stomach (one hour before a meal, or three hours after)once each day (see Figure 1).

naturalthyroidsolutions.com...

virtualreality profile image
virtualreality

I'm on a similar combination to you - 100mcg T4 plus 15mcg T3 and still working on vits and mins alongside. When I increased from 10mcg T3 to 15mcg I had symptoms for two weeks - things like being more aware of my heartbeat, anxious mood, restlessness. They were fairly mild but I'm certain they were linked to the dose increase. It looked like 15mcg might have been too much for me and I was on the verge of dropping back down to 10mcg when they literally dissipated overnight after two weeks and haven't come back. So based on that it could be worth giving the new dose some time to settle down, unless you get very worrisome symptoms of overmedication. I do also give it at least 8 weeks before re-testing TSH/thyroid hormone levels because I've found it can all take a while to stabilise and get a clear sense of whether the dose is suiting me or not. It's hard to tell what's what when vits + mins aren't optimal - like you, I'm struggling to increase my ferritin from around 40 in spite of supplements, so for now I'm concentrating on that. But of course your body might need a different approach. Good luck with finding the right combination for you - seems this is a long road we're travelling!

Murphysmum profile image
Murphysmum in reply to virtualreality

Ugh. The ferritin!! I’m trying digestive enzymes with mine now to see if that helps - don’t know if you’ve tried that?

I’ll grin n bear it for a while then, I know it takes me a long time to see the end result of a levo change - was hoping T3 might be quicker. Interesting what you say about the two week thing though.

I’ve seen a lot of people taking about 125/100 mcg levo + 20mcg T3 and wondered if I should aim for that as it almost sounds like the most common dose.

Hmph... will wait it out for now!

virtualreality profile image
virtualreality in reply to Murphysmum

I know, that pesky ferritin!! It's (hopefully) the last piece of the puzzle for me and at the moment it won't budge! The pace of change is so frustrating sometimes isn't it, especially when T3 is fast acting. I don't know if this has been your experience too, but I think I was probably undertreated on T4 only for over 14 years, so my T3 levels could have been low for a really long time. So I guess even with taking T3 and having more in my blood it might take quite some time for the whole system to re-adjust to it, maybe new T3 receptors need to be synthesised, who know what other effects it may have had.....so I'm trying to be patient! But 6 months in it is soemtimes hard to stay patient! I hope you have a quicker and easier time of it. Thanks for the tip on digestive enzymes too, I haven't tried those yet but may well do. At the moment I'm going down the dietary changes and supplements route but if that doesn't start having an effect soon I think I will need to try something else.

Murphysmum profile image
Murphysmum in reply to virtualreality

I’ve wondered if I’m the same.

I remember having really bad “baby brain” that started towards the end of pregnancy 1 and never left, and then crazy tiredness after baby 2 that I assumed was just “well, you’ve got two young kids”.

Now I think although I was well, the relative under medication plus lack of absorption of vits n mins has meant I’ve been becoming less well for about 15 years.

And like you, I’m sure that’ll take time to reverse but when I got a wee glimpse of “normal” (which felt like being superwoman!) a few weeks ago, I thought it was brilliant! Now I see it’s not just that easy 😕

We’ll keep going though - let me know how you get on with the enzyme thing too, I’ve only been doing it a week or so, time will tell!

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