Reducing/ stopping T3- advice please

Hello everyone

I realise it’s the holiday period and people will be busy, but I’m in a bit of a quandary about what to do with my dosage. I posted something similar a while ago.

Firstly, I don’t have recent bloods as they were lost in the postal drama and have been reissued with another thyroid panel by Medichecks (very helpful) to do in the new year.

I started a trial of T3 back in March and had an initial improvement (I thought) but not sure if this was a placebo effect. I feel I’m really struggling to tolerate T3 since those early weeks. My dosage is 100 T4 same brand Accord and 15 Lio taken in 3 doses 3 times a day. Recently, I dropped the evening dose as it was interfering with sleep and I often feel very jittery and trembly after the other doses which I beginning to find intolerable.

Many moons ago I was on a dosage of T4 only about 100- 125 per day- my T4 was mid range and T3 always hung around 4.2 (3.1-6.8). I’m not a good converter, hence the trial, but the truth is I’ve not felt well since starting it. It’s had a very small impact on my T3 levels, if any, and I really dislike having to take it. Whilst I never felt great on T4 only, I was functioning, holding a job down, living and sleeping. Yes, I had headachey days, days when I ached etc fuzzy eyes here and there but I was functioning. I could rely on how I would feel the next day and could make plans.

I tried T3 as I was desperate to recover from a terrible flare when I went over range last November 2021- it meant I was off work and eventually, as I haven’t recovered, had to leave my job in October this year.

My priority now is to try and find some ‘norm’ that I can function with and T3 has not proven to be the game changer for me. I find myself quite unsettled on it and out of sorts.

I need my bloods doing in January and will discuss with my private Endo after that, but I would love some thoughts on how to go about reducing safely in the meantime so I don’t feel a tremoring wreck. I know people have said it’s also a sign of undermedication, but the truth is I’ve lost my confidence in T3 and want off.

I know it’s said not to change two things at once but I know my Levo is quite low at 100 per day for me as I had 6 week bloods on this dose last winter and there was plenty of room for an increase (TSH 2.47 range 0.27-4.2, T3 3.22 range 3.1-6.8 and T4 15.9 range 12-22) I think SlowDragon rightly suggested this should have been increased first by the Endo before adding T3 and I only wish I had done this.

If I drop by 5 Lio how long before I can drop again? I can’t bare 6 weeks. Is it safe to simply switch to Levo only overnight with a small increase to compensate?

Lots of questions and a long post. Any experiences or thoughts would be gratefully received. I know I don’t have recent bloods but it really doesn’t matter as it won’t change my view on T3. I had a SST a while ago and the NHS Endo said my reading was low at 200, but not enough to warrant treatment. I did respond to the injection up to 600 so he said he wasn’t concerned. However, I have long since suspected adrenal issues and maybe this is why I’m struggling to tolerate T3.

Many thanks if you are able to help with safely getting off T3 to T4 only.

🦋 x

[GlowCoach Administrator]

2 months ago you had low ferritin and folate. No result for D3.

Biggest reason for intolerance of T3 is low or sub optimal vitamin levels.

By all means stop the T3 but in my experience you will lead a shadow of a life if it's something you really need in your treatment. Better to tackle the low vitamins and feel better from that alone, then tolerate the T3 as well.

[Hidden in reply to GlowCoach]

thank you Jaydee1507

The thing is I’m leading a shadow of a life right now if I’m honest. I’ve done the liver pate etc and added in folate in the last 8 weeks but I’ve not had vitamins checked. My thoughts were to trial no T3 with a view to adding in a tiny bit later if needed. I’m at a loss as to what to try next but as I am is no way to live so prepared to give it a go. Sorry if I’ve not checked your journey- have you ever reduced of T3? Do you know best way to do this? X

[GlowCoach Administrator in reply to Hidden]

Actually I have reduced T3 , was taking NDT for a while a long time ago but all of a sudden got horrible intolerance symptoms. I now know was due to low vitamin levels, inparticular ferritin. Also likely not enough thyroid hormone. That was a long time ago and on Levo alone I became housebound for the past 9 years. Now got vitamin levels optimal and on 15mcg T3 split in 3x +125mcgs Levo. Still waiting for more energy and better times.

If you really have to reduce the T3 then do it very slowly over many weeks. 5mcgs or less at a time with a 2-3 week gap between drops.

2 months of eating pate won't be enough to raise your ferritin to an optimal level. You really should do bloods before changing anything else you have wasted a lot of time. Ideally before starting tT3 it's best to get all your 'ducks in a row' to avoid intolerance symptoms.

[Hidden in reply to GlowCoach]

thank you Jaydee!

I really appreciate the help. I have done the pate thing for 8 weeks, but I’d orders bloods to get a baseline and avoided strike windows to be hit by the backlog so I’m having to do again in January. My vitsmins have been in too third in the dosage of 100/15 but I didn’t feel that great then either. I think there’s a bit of intolerance for me. I did get tremor within about 1-2 hours from the outset.

I only got tremor when first starting on Levo and then after a handful of weeks it disappeared until I ended up overdosed and probably a swing due to chronic thyroiditis flare.

Are you feeling better on your combo now? I hope you’ve started to feel better on this and that the energy comes back 🤞

[GlowCoach Administrator in reply to Hidden]

My last medichecks test was done on a strike week. Sent it 10am Monday and they got it mid Friday. Luckily it worked but I was sweating on it a bit! Sorry yours didn't.

If you do feel you want to try T3 again then make sure vitamins are optimal before you start. It's making the world of a difference for me now.

Thanks for the good wishes. Some things are a bit better, as you would hope with an added 15mcgs T3! Not having to slather on steroid creams and ointments everywhere all the time is good, not so much dry coughing, can actually bring stuff up from chest, slightly more staying power and some sleep improvements. A long way to go though and probably won't be til end of summer I'm reaping the benefits. It's been a long while.

[Hidden in reply to GlowCoach]

Jaydee1507

I admire your tenacity and hope to find mine again. I think I’m just beaten down with it now and have long since forgotten getting up and feeling normal. The last time I had this was when on T4 only so I feel I have no choice now but to revert back. I’ve thought about Lalatoot’s process to reduce and this would at least mean I don’t ‘miss’ what might work Eg just the morning 5 if I go slow. I have a feeling my private Endo will say stop immediately as this is how I started on it- 15 overnight which I now see on here is NOT the way to go. He also reduced my Levo from 100 to 75 and this left me with T4 below range.

I do need to focus on my diet now as it’s been a bit off recently, loss of appetite etc so it’s priority for me now. I’m glad your making those steps forward and fingers crossed summer will see you at your best 🤞😁 x

ps so glad you got your medichecks over the line! 🙌 I bet you were sweating! I was forever checking tracking and email 🙄 I really needed those results but that’s life. I’ll be hot footing it to the clinic for the draw asap in January and have ordered vitamins/ iron to check.

[Lalatoot in reply to Hidden]

5mcg drop every 2 weeks. When I have reduced my t3 dose it has taken 4 to 5 days for me to feel the benefits of each reduction/ overmedication. Then give the body a little time to adjust before the next drop. Hence every 2 weeks.

[Hidden in reply to Lalatoot]

thank you Lalatoot

This is really helpful. Were you reducing on just T3 / T3 only treatment?

I’m wondering if at what point you might increase Levo to ensure not falling deeply hypo. I could manage a drop in Lio once every 2 weeks as this would be six to remove but I think I’d need a maybe extra 12.5 Levo per day at some point to ensure I don’t slide too low. See, the bloods were ok with the 15 Lio it’s how it makes me feel, if you know what I’m mean- definitely over medicated but not on lab work. It’s so frustrating. I think it’s too ‘charged’ fir my system.

Looking at my previous bloods last year after the going over range and reducing from 150mcg- bloods were middle range around 112.5 per day. I’m sure my thyroid’s more wrecked now but I really don’t cope with levels in top third- I feel over medicated.

I’ve noticed in your bio you do 2.5X 3- are you finding it enough? I can see how powerful it is now I’ve done months on it. I have Thybon Henning and it’s impossible to go less than 5mcg and even that’s hard to get even so I’m stuck with 5s.

Thank you so much for help! X

[Lalatoot in reply to Hidden]

Butterfly I was increasing levo and decreasing lio T3. I was on 50mcg levo and 20mcg lio. This gave me ft4 0% and ft3 76%. It made me feel ill as I needed a higher ft4. I reduced lio T3 by 5mcg and waited 2 weeks then I increased levo by either 25mcg or 12.5 mcg waited 8 weeks and did blood tests. This was done slowly as I was trying to find doses that worked for me and I didn't want to miss what worked by not being slow and methodical. I have ended up on 100mcg levo and 7.5mcg lio T3. My ft4 is 50% and my ft3 72%.

It is also worth noting that our body needs time to adapt to having adequate hormones and that this can take time.

[Hidden in reply to Lalatoot]

Thank you this is really clear I appreciate you sharing Lalatoot. Has the over medicated feeling gone now?

I’ve done almost 2 weeks on 10 Lio as I couldn’t cope with the evening dose and everything was screaming no when I looked at it at bedtime, I’d even tried it a bit earlier for a few weeks, but still didn’t suit. (I’ve also tried 10 morning and 5 afternoon- bloods dropped) so my thought were to drop the 5 afternoon dose next, leaving just the morning, and maybe add in 12.5 T4 at that point, hold for 6 weeks and test.

I have contacted the Endo for a consult in January but I now know I need to do something about this T3 sooner rather than later. It’s not as if I won’t have T4 in the system and I’m quite small and weight 57kg so even 100mcg should keep going x

[Lalatoot in reply to Hidden]

Butterfly things are much better thank you. Having said that I still have symptoms which I believe are now from the adaptations the body made when I was very undermedicated. I don't think altering my doses now will improve things - I believe I need a steady, stable dose so that the body can re-adapt to having adequate hormones again.

I had RAI to correct an overactive thyroid after 5 years of carbimazole . The endo was lovely but not well informed. Tests were not done soon enough after RAI and there was a panic when they were eventually done and my ft4 was 4 (10 - 25). It was very difficult to get better from there and the endo was happy keeping my TSH at the top of its range and my ft4 low in range. This went on for 4 years. I ended up housebound. Only by educating myself from this site and being pushy and guiding the endo to my way of thinking did I get better treatment.

[Hidden in reply to Lalatoot]

that’s such a difficult journey Lalatoot! I’m so sorry you’ve had this to cope with and I have done a year housebound and away from normal life so can see how devastating that must have been. I feel my body needs the same as well- steady and a long, long time on a functioning dose to allow me to recover from this last rollercoaster year. I noticed your current dose is on a par with the 50/20 combo as I’d read somewhere that 5 Lio is about 15-20mcg T4 so are you feeling your body coped better with the T4 over T3? X

[Lalatoot in reply to Hidden]

I don't consider equivalent values of T4 to T3. I was on 100mcg levo before I added T3. I am a poor convertor so my TSH on 100mcg levo only was under range, my ft4 at 60% and ft3 at 17%. No equivalent amount of levo T4 would have helped; what I needed was T3 and only a little T3 to replace the poor conversion. Unfortunately the aforementioned endo decided that T3 came in 20mcg tablets so that was the dose and that to add T3 I had to reduce levo by 50mcg. That was how I ended up on 50mcg levo and 20mcg lio T3.

[Hidden in reply to Lalatoot]

that’s so like me Lalatoot!my numbers were similar. No matter how high T4 I went from 100mcg (to 150 and over range), my T3 went down! So it made sense the trial, but I think like you, the drop from 100 T4 to 75 and the 15 T3 just wasn’t right- we upped the T4 but now ‘feel’ overmedicated, difficult to relax and but be aware of my body and vibration feelings etc. Awful! I’m glad you’ve found the T3 dose that’s just enough and I think that’s my next step. Something went very wrong after the introduction. I only wish he’d started me on 5 added to 100 and we’d moved from there. I wonder if you have/ had the same Endo, although mine seems to like 15 as a starter! X

[Hidden in reply to Lalatoot]

I remember looking at your post Lalatoot with your before and after pictures and warning against reducing/ stopping Levo. Thank you as at the time it stopped me doing just that when I wanted to throw the towel in and felt I too was being poisoned by T4. I never felt quite the same since starting, but in the early days and low doses I had felt quite good. Just need to track back a bit now 🤞and be brave- and patient. Where I am now isn’t cutting it thanks again for help x

[Lalatoot in reply to Hidden]

Glad I helped! All the best.

[FancyPants54 in reply to Hidden]

I cut Thybon Henning 20mcg tablets into quarters with a pill cutter and then into 8ths for a 2.25mcg dose with a sharp scalpel.

[Hidden in reply to FancyPants54]

You must have steady hands FancyPants54 My pill cutting is useless.

Thanks for this- I’ll invest in a new pill cutter and a scalpel- it will help as I could then try 7.5 next opposed to just 5.

X

[Aurealis in reply to Hidden]

some pill cutters are better than others….

I prefer this one

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[Hidden in reply to Aurealis]

thank you! I bought this so will see how I manage it 😁🤞

[Lovecake in reply to FancyPants54]

I break mine. Not always equal, but over 2 days it’s correct.

[Hidden in reply to Lovecake]

thank you Lovecake I’m thinking as long as it all goes in 👍

[pennyannie]

Hey there - just a quick message as I need to close now but can pick this up tomorrow if you wish -

Have you given any thought to taking Natural Desiccated Thyroid which contains all the same known hormones as the thyroid gland and the original successful treatment for hypothyroidism for over 100 years ?

[Hidden in reply to pennyannie]

Hi Pennyannie

I absolutely have. My thoughts are to go back to baseline on T4 only, give it a good run (as I have with the combo) and then find an Endo that will prescribe they if I don’t find a good way to live with this condition. I’d try anything to feel more like me. Yes please, if you could come back when you’ve time I’d appreciate it thank you x

[pennyannie in reply to Hidden]

Ok - good morning to you :

I couldn't remember last evening if you had tried NDT but felt I'd written to you before but not awake enough to make much sense !!.

NDT is pig thyroid dried and ground down into tablets referred to as grains and each grain contains trace elements of T1, T2, and calcitonin plus a declared measure of both T3 and T4 - and the original treatment or hypothyroidism and used for over 100 years and long before we even knew of blood tests or T3 and T4 hormones.

Suspecting a person was dealing with symptoms of hypothyroidism the doctor would cut off a slither of dried pig thyroid for the person to chew on, and if symptoms were not fully restored, at the next appointment a slightly larger slither would be dispensed, until such time as the ' right sized chunk ' was established - and the correct dose agreed.

Big Pharma launched their T3 and T4 options on the back of the success of NDT in around the middle of the century and then went about obtaining their market share by fair means or foul.

NDT is meant to be available on a " named person only prescription " through your NHS primary care doctor and either Armour or Efra prescribed on the NHS.

Up until around 20 years ago your primary care doctor had both T3 and NDT in his own tool box of tricks to prescribe, as he saw fit , when T4 didn't fully restore a patent's well being and health.

Armour and Efra are the 2 most well known and established brands and can be purchased without a prescription from the States whilst others buy from Thailand, myself included, a cheaper, though no less reliable brand.

Most NDT grains contain 9mcg T3 + 38mcg T4 so you will need to also buy a pill cutter and we generally start with 1/4 grain increments up and down until we feel the relief of symptoms of hypothyroidism.

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels.

So, have a think, you have another option to try, if you wish.

[Hidden in reply to pennyannie]

thank you Pennyannie

You have helped me in the past and I thank you for this, too! It’s it something I’ve ruled out- my plan was the combo, now Levo as I don’t think I’d manage on T3 only- then NDT! I hope you have found wellness

X

[pennyannie in reply to Hidden]

Well yes, I'm much improved on NDT -

it's a T3/T4 combo but already with a fixed ratio of these two thyroid hormones incorporated and attached to thyroglobulin within the NDT grain.

To this end NDT is more slowly digested and absorb within the body which , for me, gives a much smoother support system.

[Hidden in reply to pennyannie]

I have heard some others mention smoother/ softer so this is interesting Penny. So glad things are better for you 👍

[DippyDame]

You really have to be committed to T3 to make it work for you....

I suspect you started T3 too soon ....before raising FT4 higher up the ref range

Also, did you optimise essential nutrients first

if you drop your T3 immediately you will then have to wait another 6/8 weeks before you test....

I know I don’t have recent bloods but it really doesn’t matter....

In the best pantomime tradition...

"Oh yes it does!!"

The labs are your guide to medication but must be used in conjunction with how you feel.

You're right, you have room to increase T4 and maybe that extra T4 will produce enough T3 to provide a therapeutic dose.....it's trial and error!

I would drop the T3 in one step ....but others may advise otherwise.

I once reduced from 200mcg T3 to 50mcg in one step (advised by a medic)...it was fine.

Ask 10 people and you may receive 10 different suggestions....you need to use that to make an informed decision.

That decision is yours!

Good luck.

[Hidden in reply to DippyDame]

thank you DippyDame

It’s good to hear you did a big drop and was ok. I know what you mean about the bloods- I was noted they got lost in transit, but I’ll get them done in the first week on January and see where things are.

[DippyDame in reply to Hidden]

You're welcome.

You'll be remembering that you need to be on a stable dose for 6/8 weeks before testing otherwise the results won't be reliable.

After that big drop I slowly started to raise my dose again until I reached my therapeutic dose....I overshot the mark during that first attempt!....but I guess that's irrelevant to you if you are reverting to T4 mono.

I suspect more T4 will do it for you.

[Hidden in reply to DippyDame]

thank you DD

I think I might get a baseline blood done in January but think you are right in that it won’t tell me much so a retest 6 weeks after. It’s a low process, isn’t it? I’ll try to be patient 😁 it’s great you got there DD! Gives me hope!

[DippyDame in reply to Hidden]

It won't be a "baseline" if you test too quickly after changing your dose because the hormones won't have had time to settle into the system....you mention below I’ll stick with 10mcg as I’m almost 2 weeks in now. ....far too quick if you are thinking of testing soon.

It can be a very long process, took me about 2 years ...but unfortunately my case turned out to be rare and difficult to diagnose.

You'll get there....just be patient!!

[Hidden in reply to DippyDame]

thanks DD I can see it’s likely pointless to do the bloods in January seeing as I reduced to 10 a couple of weeks ago. I’ll hold off! Thank you 😊 I’ll try to be patient 😁

[Aurealis]

I can’t advise you what you should do but wondered if it would be helpful to share my experience with you. T3 did cause an improvement for me but it proved impossible to get stable on T3 and Levo. For me the solution was to replace Levo with NDT. It wasn’t a quick fix - took about 12 months to adjust dose optimally, but well worth the perseverance. We are all different though. Good luck

[Hidden in reply to Aurealis]

I’m

So glad this had worked do you Aurealis- NDT isn’t something I’ve ruled out so it’s something to think about. Thank you for replying x

[Me1157]

Hey butterfly, here's my take. I hope it helps. Your symptoms should be taken into account as well as your blood tests. We are all more than what our blood says. Your vitamin levels need to be right or nothing you take will work. I had RAI back in 1978 at Scott and White in Temple Texas ( when I was living there). They were pioneers in RAI and thought to be the new best treatment for people with hashimotos. I wouldn't do it again, nor would I recomend it.

Since then, I have always had to suppliment my vitamins and minerals, eat a natural diet with no additives, preservatives or I too lead a shadow life. I take amour thyroid ( NDT). I haven't done T3 only. But I do listen to my body and take all my symptons into account. If I were you. I would come down on the T3 very, very slowly. At the same time investigate with bloods and your doctor why it's not working for you. I too am a poor converter. So it makes sense to me that you need some form of T3 like I do. Leveythyorixine hasn't worked for me since 2003. I doubt it ever worked properly. I was fortuneate to meet a homeopathic endocrinologist, who got me on the right tack. I have since has some hickups - and set backbacks. But that is when I rebel against taking all my suppliments, eating right, panic and change medication. In search of a better way..... thinking with all the advancements in medicine it must be easier than this....but there isn't, at least not for me.

How is your gut health? Our digestive system is very important to assimulating properly everything you eat or take. probiotocs and digestive enzymes and the right diet can help with what is known as a leaky gut. Do you know how to do muscle testing? I do the standing swaying way and do it with most suppliments, food, drink and medication. You need to take a few deep breaths first to clear your mind and watch a couple of different videos first. There's a few of them on youtube. When I do it with a can of coke, I get pulled back a lot and some suppliments don't work for me either. Try it. I'm not saying that it is infalible but when done correctly it's another great indicator to communicate directly with your body to see how it's doing with everything you're putting into it. youtube.com/watch?v=rKCQCHb...(Not working as expected?) I wish you well and hope you soon get back to being yourself.

[DJ3271 in reply to Me1157]

Wow! We are similar! I am on Armour as well, and eat VERY CLEAN and keep my vitamins up. I was having the worst anxiety and chest pain on Levo. We really need to take our health into our own hands. I have learned so much from this website. Good luck to the OP!

[Hidden in reply to Me1157]

thank you Me1157

It’s great you are doing well now and have found ways to get your health back. I’ll have a look at this and give it a go! Thanks for helping x

[Me1157 in reply to Hidden]

You're very welcome

[McPammy]

I really do think you need your blood test results for T3, T4 and TSH along with vitamins before you change anything. I have always thought you may be on too high a dose of T3 too and suggested trying just two doses rather than three a day. It’s all so very tricky trying to balance medication out that suits you individually. If you reduce T3 you may well need to increase T4. Your body will be on a roller coaster initially trying to balance itself out. When I introduced t3 to my usual T4 medication I initially didn’t change my T4 dose as my latest results at that point said my T4 level was just under the highest point after taking my morning T4 levo. So I knew I wasn’t over medicated on T4. I started adding 5mcg Thybon Henning in the morning then another 5mcg late afternoon about 3pm. I felt absolutely brilliant for some time. Then I started going over medicated I felt. So I reduced my levo by just 10%. I felt much better again. I also split my levo dose this helps as I don’t get spikes of over medicated feelings. My bloods are always low mid range now without ingesting any medication prior. And my TSH is just about in range reflecting that I don’t over medicate. Also all my vitamins are optimal which does have a positive impact too

If I was you I would get the bloods first then make a decision. Your Endo will struggle to help you if he hasn’t got the latest results. You need to know exactly where your bloods are. Can you remember how you felt prior to starting T3. What were the bloods then. Was your T3 too low. Why did the Endo prescribe T3. I think you may have started on too high a dose of T3. Try splitting your levo dose also.

I know it’s so hard especially when you’re feeling crap. You must do everything slowly to avoid feeling suddenly worse. For me T3 has been a miracle. But maybe that’s not the case for everyone.

[Hidden in reply to McPammy]

Hi there McPammy

Hope all is well?

You are right and I know we’ve had that ‘too much’ conversation and my gut is telling me again it needs to come down. My T3 was low pre trial and have conversion issues, although not positive on the gene test. I do think the 15 was too high for me from the outset and the T4 should have been increased first. I’ll stick with 10mcg as I’m almost 2 weeks in now and get the tests done week after next. I’ll keep my T4 at the same 100 as I’ve not changed this for months. I’m so glad it’s worked so well for you and you’re feeling well. Thanks for helping McP! Xx

[CoeliacMum1]

I’ve come off Liothyronine (T3) must add as an experiment, it was suggested it’s acting as a placebo.

I was on 10mcg T3 (split this taken twice a day) I lowered to 5mcg I took my same levothyroxine (T4) in morning and the 5mcg T3 in afternoon after a month I upped my T4 and stopped my T3 … I do plan on going back if the next stage doesn’t show anything.

I’m being tested for Addison’s the new endocrinologist thinks I possibly have adrenal issues… I’m having synacthen test on 7th January… I’ve got to come off my Fostair I take for asthma for a week as any steroids will void the test… I can take my ventolin. I have had a morning cortisol blood test before and it was totally fine, but since I’ve read these aren’t very accurate, and saliva is a better test.

I’m not expecting anything from the adrenal test, also he’s running a glucose tolerance test. I do I get hypoglycaemia symptoms periodically, but have normal to a bit on the high side, HbA1c levels sometimes… could be pre diabetes but he also mentioned Type1 as I have poly glandular autoimmune disorders 🤦🏻‍♀️

I actually fit more the Cushing re adrenal than Addison, Type 2 diabetes than Type 1 in symptoms I thought 🤷🏻‍♀️

Re T3 my levels hardly budged although I guess it was a low dose but my FT4 nose dived also and TSH nearly suppressed so endocrinologist wasn’t giving me any more T3… we experimented with more T4 prior to trying T3 and didn’t seem to do anything and I was on T3 almost a year… my heart rate went up slightly my weight lowered I’d say naturally as it was very gradual over 8 months, lost nearly a stone in weight… and although I did get to a standstill re my mobility improving it was an improvement so I intend to go back on it once this little experiment is sorted.

I agree with the others regarding nutrition status and an area I’m concentrating on improving as I too have Vit D, folate & ferritin in not so optimal ranges but GPs won’t sort if not deficient so up to us to get that mid upper ranges.

There’s a few things that deplete vitamins as well as the obvious vitC with iron for absorption boost … cooking depletes folate and as does drinking alcohol and stress, stress also plays havoc on adrenals … lifestyle choices can often help these areas. Magnesium has calming influence on us too possibly try that as long as doesn’t interfere with other medication you take, look it up see which type might be more suitable to you, as some are for more digestive problems, others are muscles and others sleep, this area people seem to ignore we can’t repair if don’t sleep.

I think the vast majority of people have some adrenal problems given we’ve all just been through a pandemic, that state of alertness, fear etc, even if people don’t think it’s affected them it has on some level, and hopefully over the coming year we will all have less burden in various areas of life and things will settle on their own, but if not do go and ask for help, if possible even just go outside for a little walk start a hobby if this is possible, to ease your mind of day to day things… small lifestyle changes help…start slowly change just one tiny thing by few weeks add another if you can if you can’t, wait another month, it’s perseverance and the small steps that lead to big results eventually.

Wish you all the best for 2023 😊

[tattybogle in reply to CoeliacMum1]

CoeliecMum1 ...that line , re. suggesting to you T3 is 'a placebo' is a pretty standard way to get people off trials of it .... when it would seem obvious that if 10mcg didn't increase your fT3 levels, the more intelligent thing to try would be increase the dose bit and if necessary increase the levo too if T4 level were going too low.

and as for nearly supressed your TSH .. 'nearly' isn't necessarily a problem . TSH 0.04 -0.4 has no more risk associated with it than TSH 'in range' does. academic.oup.com/jcem/artic...

And in patients whose TSH is kept deliberately supressed with Levo to prevent reccurrance of thyroid cancer they found no significant increase in bone problems. healthunlocked.com/thyroidu...

[CoeliacMum1 in reply to tattybogle]

Absolutely agree, re thyroid situation it possibly is “the more intelligent thing to try”, however endo that prescribed T3 retired and I had then no way of getting T3 initially, and haven’t pursued that area yet.

On seeing a new endocrinologist it did disappoint me re thyroid and was ready to call it a day with endocrinologist, but on reflection I’m willing to give these professionals benefit of doubt, as they have my full health history in front of them. I’ve been on corticosteroid medication many decades so adrenal situation can be very likely, but like I said I will self medicate if this endocrinologist doesn’t return to my situation after this is discounted. Apart from a higher heart rate it had positive results although did come to a standstill and I thought I mentioned maybe I did require a higher dose of T3 as low dose (obviously endocrinologist was following guidelines) he resisted higher dose based on TSH (he was keeping me above 0.3) which I’m aware isn’t all it’s cracked up to be…muscle weakness is also prevalent in adrenal problems the drop in blood pressure and hypoglycaemia dizziness all point that way too on this basis, I am willing to get this checked out.

My thyroid situation came completely out the blue, I was asymptomatic really, only thinking the weight gain and tiredness was something just get after birth of their children, and just dealing with it… then move on couple of decades, apart from constipation it was only symptom I had, until 8months on 100mcg of levothyroxine (T4) I started with muscular problems weakness then leading to spasms more last 5 years but not had that for nearly 2 yrs but have had a lot of stress losing my father, I’m perimenopausal and now on hrt. So things have improved.

I actually didn’t like being on higher doses of levothyroxine & Liothyronine it made me feel hyper, buzzing and unsteady. I had experimented with various doses of T4 only thing I never increased was Liothyronine…although I did notice thinning of hair and being drier and frizzy on Liothyronine which has now settled now off it… so like this person I wonder too if adrenal is a problem and why I’m given this benefit of doubt. I assume nothing will come of it and will return for advice with a new post re dosing of T3 when ready to start. My symptoms aren’t fully in-line I’m told with thyroid symptoms (although beg to disagree) my muscular problems are neither fibromyalgia type but are spasms with weakness, exercise doesn’t build my muscles strength either, which all medics have questioned, however Aldosterone excess can cause this!

[Hidden in reply to CoeliacMum1]

thank you so much for the uplifting thoughts and I agree that I need to look at all aspects of life to get on top of my symptoms. Sleep is definitely one thing I need to improve. I know when I was well medicated on T4 only, I slept long and deeply. No issues. I think you are right about the impact the pandemic has had in us all, everyone of us, and it’s going to take for us to heal and recalibrate. I have had significant stress recently and do think this has led to thyroid dysfunction last November after an awful infection and then considerable personal upheaval. Things are more stable now so I want to start looking at my hormones and give myself the best chance to feel well. Thank you for your thoughts and replying in such detail- I appreciate the help and support. I hope the SST goes well and you can get to the bottom of what’s happening. I’ll keep an eye on your posts x

[Kapuna]

I was on 100 levo and 10 lio morning and night and the endo dropped me to 5 lio am/pm. Things were fine for a while but about a month ago I realized I was feeling hypo. I had nighttime cramps, fuzzy thinking, dry eyes and mouth, and hair loss. My resting heart rate was 56-63 bpm. I was miserable and on my own went back to 10 lio. I immediately felt better. My memory improved, and I don’t feel hypo. Note that my TSH was <.02. My resting heart rate is now 65-70. Lio works for me!

[Hidden in reply to Kapuna]

Kapuna that’s great news you’ve found your dose! You just have to listen to your body over results I think. It works well for so many 😁

[arTistapple]

You sound like you have a particularly complex health picture. Whatever you do take it easy with your thyroid meds otherwise you are not going to have a clue what is going on. I get what you say about them having your whole health history in front of them BUT I can assure you medics seem to be perfectly capable of NOT being able to join dots. Stay aware.

[Hidden in reply to arTistapple]

so true Tistapple

And I’ve been under a private Endo and NHS one (saw two different ones each time) , my GP just issue the meds and my private GP initially got me well after diagnosis by prescribing a therapeutic dose that my NHS one wouldn’t (started me on 25mcg and I was bedridden) so much of my problem is of my creation by not sticking to one and having it all in one place. The issue being like many on here is we a desperate to get well and have to go out and seek help. I think this had added to the complexity that you rightly speak about. I now need some stability.

Funds are limited now so it won’t continue but I’ve learnt many lessons in the last 3 years. Just need to get a working dose and stick now 🤞 I hope you’ve found good health now Tistapple?

[arTistapple in reply to Hidden]

I wish! However I am not yet ‘there’ either. Lack of confidence (let down so often over many many years) combined with desperation. Not a good mix in our case, I think. I have messed things up at the moment and I have an endo appointment (previously cancelled) in three weeks. My bloods will be inaccurate but I just don’t want to reschedule. I just hope this person is open to giving me good advice and a prescription to start post-appointment when I can arrange better settled blood tests!

[Hidden in reply to arTistapple]

hi arTistapple

I’ve just read your posts and can see where you are at. I hope you’re feeling better than a couple of weeks ago? I’ve done the same as you in the past and gone too fast and Tattybogle’s thought on going slower and smaller than we want to I’d advice I need to follow. I hope the appointment goes well! My bloods will also be a bit wry for my next one too so I feel it for you, but sometimes we need to feel someone is in the driving seat when we feel incapable of taking the wheel. This is where I am at the moment. I’d lost confidence in my private Endo and with remote zoom appointments it really wasn’t the way to go- but I couldn’t find help locally and now I’m in the position of being out of money for private (I’ve spent far, far too much and it’s not got me well) and waiting on an appointment with the NHS consultant in February. We’re not alone on here but it can feel scary in the actual world when you’re feeling terrible.

I hope things have improved in the last couple of weeks for you x

[arTistapple in reply to Hidden]

Thankfully things are better. Not great but probably returned to that level that medics want us to be - surviving but no quality of life. I am grateful not to be feeling outright terrible BUT what I used to think of as depression I really think is the most crushing dose of boredom. My head seems to be better for my misguided foray into T3 but I am no more motivated than before. My physicals are terrible. Executive functioning marginally improved but far from optimum. Mmmm. I have taken an interest in a positive way. I bought some clothes online. I have not done that in probably five years, so I think I am hoping! I did get what I think of as a taste of ‘normal’ before everything went pear shaped. That is what I want and I want it for all of us. It’s a struggle trying to keep things simple. Life seems so unnecessarily complicated. I think a lot of non-thyroid people also feel like this but we get to feel it more acutely. Roll on better levels of meds for us all!

[Hidden in reply to arTistapple]

I’m pleased you are feeling well, if not good at least functioning. Oh for a quality of life! But I’m glad you’re not in that awful place. I get the boredom thing. I’m so tire of thinking about my health opposed to what am I doing today! I want that feeling for us all too. I hope your Endo helps arTistapple! X

[arTistapple]

Thank you for getting back to me. You have helped me sort out my thoughts a bit. An unexpected bonus. I was trying to help you but I ended up getting help from you. I love this forum.

[Hidden in reply to arTistapple]

oh thank you 

Reading your thoughts chimed with me. It’s good to know others think and experience the same x I hope today is a good one 🤞

[Lisajane747]

HiI was on t3 felt amazing and then my endocrinologist said time to come off i was horrified and arguing with her, but I have to say it was for the best. And actually felt a lot better and don't think I would go back on T3.