what to do ?

[Prosecco1997]

I have had my dose of 75 mg levo reduced to 50 for the past 6 weeks as I’d gone over , iam now feeling the most awful symptoms returning, very painful right throat chest , crying down , light headed weak , can’t get to speak to my doctor till the 6th September, should I increase back up , feeling so ill and realy uncomfortable , palpitations aswell , I do have a heart rythym problem

[Regenallotment Ambassador]

I’d get a full thyroid panel blood test done privately while on 50. And use that combined with your symptoms to make a decision.

Another thing you can check is your resting pulse. Do you have a Fitbit or Apple Watch? If not you can count your wrist pulse beats watching a clock for 15 seconds and times by 4. For true resting pulse sit and relax for a good 20-30 mins before taking it and do it a few times, as it can quicken just thinking about it 🫣

I know that my normal is ‘55-58’ and over replaced for me is ‘70+’. Hypo for me was 46. Hubby’s normal is 48 and GP has run ECGs blood tests etc and just says that’s normal for him.

Try and remain calm about it all as the stress and scary factor can make us feel so much worse.

Going over range gave me a loud heartbeat at night that returns if I eat dark chocolate too late in the evening. It also gave me an upset tummy, sweaty face.

Low B12 gives me awful anxiety and mental health symptoms (catastrophising, rehearsing daydream traumas) and aches.

Maybe something like alternate days 50/75 would help to start with if you need to increase? If that’s too much try 50/50/50/75 etc or you may not yet have come down enough… 🤷🏽‍♀️

Good luck let us know how you get on 🌱

[Prosecco1997 in reply to Regenallotment]

Thankyou , my tsh is 3 it was 0.13 ? Antibodies are85 , now are 259 I do have hashimotos

[greygoose in reply to Prosecco1997]

So, did your doctor reduce your dose due to over-range FT4, or low TSH?

Antibodies fluctuate all the time, it doesn't mean anything. Once you've had a positive result and know you have Hashi's, it's not even worth retesting them.

[TiggerMe Ambassador]

Previously your fT4 was only just above range so your GP has reduced you by too much when really just dropping perhaps 2 days a week to 50mg and 5 days 75mcg would likely have been enough to bring you back into range.

GP's do seem to like changing in 25mcg but it is too heavy handed when you are very close to your sweet spot

Yes I would increase the dose as it is only you that will suffer if you don't and you can explain that to the GP when you hopefully will be feeling much better 🤗

[Prosecco1997 in reply to TiggerMe]

Shall I increase to 75 from tomorrow mon to fri then 50 weekends ? Or alternate the days

[TiggerMe Ambassador in reply to Prosecco1997]

That might be a good idea to get things moving in the right direction... personally I have to add an extra 100mcg over the week and tend to add 50mcg Wednesday and another Saturday but it really is a personal thing as some people will notice the 'lower' days, you can always tweak later 🤗

[Prosecco1997 in reply to TiggerMe]

I’m only worried as don’t want to make heart palpitations worse , but I’ll give it a go thankyou

[TiggerMe Ambassador in reply to Prosecco1997]

Were your heart palpitations worse on 75mcg or now?

[Prosecco1997 in reply to TiggerMe]

About the same realy , but now getting a few more

[Prosecco1997 in reply to TiggerMe]

Doctor said they would reduce if I cut down to 50 ? I have realy bad anxiety, just want to feel better

[TiggerMe Ambassador in reply to Prosecco1997]

Anxiety and palpitations are symptoms of low thyroid hormones

With your TSH already up to 3 you are hypo

[Prosecco1997 in reply to TiggerMe]

So it’s best to increase again , Thankyou for your help

[TiggerMe Ambassador in reply to Prosecco1997]

Absolutely 🤗

[Prosecco1997 in reply to TiggerMe]

Iam very tearful today and keep feeling hot , i took 50 this morning , havnt stopped crying all morning, do you thinks it’s my levothyroxine, because I have nodules can they produce more thyroid ?

[TiggerMe Ambassador in reply to Prosecco1997]

Sorry to hear this, nodules could flare up... have you had this happen in the past?

I'm thinking it is all rather more likely in reaction to the reduced T4 which also effects your other hormones and probably your adrenals are kicking in, but it really is hard to know for sure

[Prosecco1997 in reply to TiggerMe]

My throat always flares up , so I’m thinking this is what’s happening now , it’s so painful this time , do nodules produce more thyroid if flared up , so could I be over medication

[TiggerMe Ambassador in reply to Prosecco1997]

I don't really know much about nodules other than they are unpredictable, they can become enlarged and either produce more hormone or none!

Let's put a shout out to SlowDragon Jaydee1507 PurpleNails Buddy195 see if they can be any more enlightening

It still strikes me that the increased anxiety points to unreplaced

[Prosecco1997 in reply to TiggerMe]

Ok thankyou for all your help

[TiggerMe Ambassador in reply to Prosecco1997]

Have you taken your temperature and if possible BP and heart rate?

[Prosecco1997 in reply to TiggerMe]

My heart rate is 59 , I’m on beta blockers , can’t do temp

[PurpleNails Administrator in reply to Prosecco1997]

You have positive TPO & so you know you have autoimmune which is known to causes fluctuations.

Nodules are very common even in those with a healthy \ normally functioning thyroid gland. So it’s quite usually to have nodules alongside autoimmune but they do occur on their own too. Most nodules do not function, but a small percentage do over function.

Doctors go by blood test levels & adjust dose accordingly rather than finding out which parts of the thyroid are working - Unless it’s becomes permanently overactive & it becomes necessary to find out why.

[Litatamon in reply to Prosecco1997]

Just want to add that I am at 225 mcg with no palpitations. But I had periods of them at much lower doses in the beginning. Makes me think it the body adjusting for some.

[MyMeS in reply to TiggerMe]

Thank you immensely for sharing your profoundly Compassionate enlightenmentsEverything you mentioned makes complete sense. Yes, they can most surely be too heavy handed with their reductions of our much needed Thyroxine

Mine was lowered by 25mcg doses too, even though my results showed abnormally low

But I don't comprehend & would like to fathom why they do this

Plus, would Our doctors be ok if we increased our doses by 25mcg on occasion? Yes you're so right, it's only us whom will suffer without tweaking

But what would a doctors reaction be towards this... I can't see mine being Compassionate & would most likely lower my much needed Thyroxine even more 😥

[TiggerMe Ambassador in reply to MyMeS]

If you fill in your Bio on your Profile page and pop up a post of your own with results we'd be better able to advise

[MyMeS in reply to TiggerMe]

I'm pretty new here & when I have a more recent blood test I will do as you recommendedHowever, I don't automatically get given my Blood Test Results

I do have to request them

I was hoping you would be able to respond to my question in general terms...

What are the outcomes for patients, if they de have to slightly increase their Thyroxine when they've had their dose lessened & they're consequently feeling unwell?

You mentioned it can be heavy handed lessening by 25mcg & that it is only the patient whom suffers, so I thought you would be so kind's to respond in general, giving the wisdom you shared, for which I previously thanked you for?

[TiggerMe Ambassador in reply to MyMeS]

It rather depends on your GP... in the past I have increased and then at my next review asked them to increase my prescription, most people have a bit of wiggle room in their current prescription to allow for a bit of trial and error... if you run a bit short then requesting an early repeat due to holiday etc can be very useful 😉

You'd like to think your GP wants you well...

[SlowDragon Administrator]

Your post a month ago with results that caused GP to reduce your dose

healthunlocked.com/thyroidu...

You were asked (but didn’t answer) ……

was last dose levothyroxine 24 hours before test

Ft4 23.3 (12-22)

FT4 very slightly over range

If you took last dose 24 hours before test …..then perhaps dose needed reduction ……reducing by just 50mcg PER WEEK would perhaps have been sufficient

Not by 25mcg per day …..which is a massive 175mcg PER WEEK

[Prosecco1997 in reply to SlowDragon]

No I took my levo the morning of test as doctor told me not change anything? So what would you advise I take now , my throat is so painful even on breathing in , Thankyou for your help

[SlowDragon Administrator in reply to Prosecco1997]

Then test was incorrect

Ft4 result was false high

ALWAYS test early morning, ideally before 9am, only drinking water between waking and test and last dose Levo 24 hours before test

Likely you now have low vitamin levels after huge dose reduction

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

As you have Hashimoto’s, have you had coeliac blood test

Get tested BEFORE trial on gluten free diet

approx how much do you weigh in kilo

Guidelines on dose levothyroxine suggests many people eventually need around 1.6mcg Levo per kilo per day. Unless extremely petite that’s likely to mean eventually on more than 75mcg daily

[SlowDragon Administrator]

suggest you increase dose to 75mcg 5 days a week and 50mcg 2 days a week

ALWAYS get same brand Levo at each prescription

Then after 6-8 weeks minimum get FULL thyroid and vitamin testing

ESSENTIAL you test TSH, Ft4 and Ft3 together

suggest you reread all advice given 4 months ago in this previous post

healthunlocked.com/thyroidu...

Irregular heart rate can be LOW ft3

[Prosecco1997 in reply to SlowDragon]

Thankyou I’m 66.678 kilograms , I’ve not been tested for coeliac , but I will ask along with all vitamins , do you think by reducing has caused me to feel unwell and caused my throat to become so painful effects chest aswell

[SlowDragon Administrator in reply to Prosecco1997]

do you think by reducing has caused me to feel unwell and caused my throat to become so painful effects chest aswell

Yes. Thyroid is swollen and struggling to make thyroid hormones

With Hashimoto’s we frequently ONLY feel well with GOOD Ft3 and Ft4

Essential to test both Ft4 and Ft3 with correct timings of test …..and to ALWAYS maintain OPTIMAL vitamin levels

Many of us find irregular heart rate improves as increase dose Levo and/or improving conversion rate by maintaining OPTIMAL vitamin levels

Strictly gluten free diet often improves absorption

about 86% of Hashimoto’s patients find gluten free helps or is essential…..but only 5% test positive for coeliac

Similarly about 50% hashimoto’s patients find dairy free is necessary as well

Hashimoto’s is often very poorly understood by GP

It’s as much a disease of the gut as the thyroid

[SlowDragon Administrator in reply to Prosecco1997]

66kg suggests you may eventually need to be on around 100mcg daily levo

[Prosecco1997 in reply to SlowDragon]

I was on 100 felt well on that , but to many palpitations so had to cut to 75

[FallingInReverse in reply to Prosecco1997]

My experience- palpitations happen during the 6-8 weeks of a dose increase … and then settle and stop after that 8th week, better by weeks 9 and 10.

So in my own experience I can be on the right dose but until it settles those weeks are full of anxiety and palpitations.

I have now decided that I will not make a decision or assessment during the 6-8 weeks where I’m on that new dose.

My solution is to increase as low and slow as I can, and hang on for those 6-8 weeks, and not to whip lash my dosing until I get through the 8 weeks and test again.

Just a thought.

[arTistapple]

How I wish endocrinologists and cardiologists would consider this situation for patients - together - that would be novel. It’s common enough for this situation to be properly studied. The literature covers it. It’s written about historically. It’s all previously accepted facts. The facts themselves are not argued by modern medicine. However modern medicine seems to overlook the whole thing at every opportunity.

Shame on both specialisms.

I too am having all these problems. Waiting for a reasonable time for blood tests to help assess what’s going on just does not cut it for me with heart issues.

Endocrinologists in what we might consider the ‘third world’, are reviving all this knowledge, whereas in the western developed nations, they are studiously avoiding it. Narcissistic doctors (leading endocrinologists and cardiologists) lacking any empathy have too much arrogance and clout and no breadth of knowledge and its application, it seems to me. Hypothyroidism really is an holistic illness and needs to be approached holistically. It’s an anathema to doctors with strong sociopathic tendencies (camouflaged as desirable firm decision-making) deeply entrenched in our accepted system of ‘health’ ruining our health and well being. IMO.

You have my heartfelt sympathies (for us both).

[McPammy]

please don’t dose by weight. It should be on blood results not weight.

Your GP has reduced your dose too much. That’s a big percentage drop from 75 to 50. If you’re struggling to get the correct dose right for you I’d request you change from tablets to liquid levothyroxine. It’s so much easier to dose and you chose your correct dose rather than tablet sizes dictating it. Also with liquid you don’t need to avoid food.

[Minimol]

Hi Prosecco, I’m sorry you’re not feeling great. I can’t add much more than has already been said except to agree that reducing your dose by 33% is a massive step change in your regimen and was bound to cause a symptom of some sort. Dropping/increasing by 25mcg is written in the GP’s instruction manual. In my experience it was far too much of a change.

Plus anxiety and palpitations are also symptoms of low thyroid hormones.

Given you felt better on 100mcg I wonder if you should really be aiming to get back to that dose?

[Judithdalston]

just a hello from another whose Gp has removed 25 mcg levo from their prescription, in my case 75 from 100 ( I take T3 too). Mine was lowered after a face to face appointment when I thought we had ( to quote dr.) ‘agreed to disagree’ after a TSH result of 0.02 ( not the first but many of years of supressed TSH). But this time my appointment was about persistent ( 4 1/2+ years) high BP/HR with Long Covid…he had had me on 5 hypertensive drugs which a Falls consultant, having diagnosed postural hypotension, was trying to remove me from. But all specialists ( cardio’s, respiratory, Falls) had just signed me off with bad symptoms expecting my GP to cope…his solution start with ‘overmedicated levo.’ despite Frees ( which he has rarely tested) being well in range! Makes me so cross that they tinker and we have to wait 6+ weeks, getting iller, for the experiment to end! Good luck Prosecco.

[Prosecco1997 in reply to Judithdalston]

thankyou I just don’t know what to do for the best

[Singingcyclist]

Hi, I’m sorry to hear you are going through it atm. I don’t know what the best action would be but I would ask for an urgent Gp appointment because it doesn’t sound as though you should be waiting so long to be seen with your symptoms. You can also ask 111 for advice.