I have lost hope. : I’ve added T3. I’ve upped my... - Thyroid UK

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I have lost hope.

Meanbeannyc profile image
Meanbeannyc

I’ve added T3. I’ve upped my doses. I’ve just never felt well and don’t really know what to do anymore... thyroidectomy due to Graves’ disease.

112 DAW SYNTHROID.

FT4: 1.4 (0.8-1.8)

FT3: 2.8 (2.3-4.2)

TT3: 82 (76-181)

TSH: 0.23 (0.27-4.6)

Same lab

FT4: 1.4 (0.8-1.8)

FT3: 3 (2.3-4.2)

TT3: 86 (76-181)

TSH: 1.2

Same lab again

FT4: 1.4 (0.8-1.8)

FT3: 2.8 (2.3-4.2)

TT3: 82 (76-181)

TSH: 0.34 (0.27-4.6)

Then at another lab:

112/5 cytomel.

FT4: 2 (0.9-1.8)

FT3: 2.78 (1.8-4.6)

TSH: 0.57 (0.27-4.6)

Then another lab

FT4: 1.76 (0.7-2.19)

FT3: 2.56 (2.77-5.27)

TSH: 0.47

Again.. original lab..

FT4: 1.5 (0.8-1.8)

FT3: 2.7 (2.3-4.2)

TT3: 89 (76-181)

TSH: 0.73 (0.27-4.6)

Struggling to get well.

Is anyone out there?

189 Replies

Fully sympathise. I haven't been good this week. Just when you think you are on the up you get a knock back. X

Meanbeannyc profile image
Meanbeannyc in reply to Lalatoot

Lalatoot I’m so lost.

Lalatoot profile image
Lalatoot in reply to Meanbeannyc

Sometimes we need to do nothing for a while. Let things be. It is hard when you feel awful. The body needs a break from constant changing of doses

Meanbeannyc profile image
Meanbeannyc in reply to Lalatoot

I’ve been on 112 for a while and 112/5 for a while

TLChoo profile image
TLChoo in reply to Meanbeannyc

When I’ve felt my lowest I’ve taken Vit D3 . I’m always up and down since TT in 2019 but twice I’ve had a really bad time and blood tests showed low Vit D.

I'm so sorry you're having a miserable time. Please don't lose hope. Wish I could wave a magic wand - or even suggest something helpful - but as I can't, am sending you a big (virtual) hug from the English south coast x

Thanks fuchsia-pink ... it’s all so corrupt. I wish I had my hyper active thyroid back. I may have been anxious and sweaty and tachycardic but at least I could function.

It looks like your dose was 112 T4 and 5 T3 and sometimes just 112. Your free T4 is fine and your free T3 is low. This is just like what happened to me. I have been on the same doses and was hypo until I went to 112 + 10. Ask your doctor if it's OK to try this. You need to find the right ratio of T4 to T3 for you.

Correct. My dose was 112 and 112/5.

Too much T3 makes me angry and breathless though

It’s difficult because my tsh pops up in cold weather. And I live in a very active climate.

I'm so sorry to hear that! I will be on the road today, driving 600km, but I will have a proper read through all the other new comments again and thinks about once more. I mean, it seems logical that the thyroid would be the most important things to focus on in your case, but I know very well from my own experience that you can have the perfect thyroid medication and still feel awful like the walking death, potentially worse. In my case it was due to an incredible amount of food intolerances, chronic lyme, lead and arsenic toxicity, leaky gut syndrome, pancreas insufficiency, mitochondrial dysfunction (very low ATP production) and histamine intolerance, which still made me feel totally hypo and depressed, super tired, achy and anxious. And I can say I have reached a point where I feel pretty much at home in my body and my life for most of the time and have found ways to feel the sense of freedom I need and even do crazy hikes on some days for nine hours in the Alps. There must be a way, but it can take a while. It took me 15 years, to be honest, but it is worth getting there step by step. And maybe you'll get there much faster which other people sharing their experience. Have you ever given Paleo AIP a go? Ideally low histamine and with mainly organic beef and venison and veggies as your main source of calories? And would you be open for an approach like this?

Definitely room for more T3 :)

Hang on in there, ...been there!

Your original labs suggest poor conversion which I expect is why you introduced T3.

However your T3 levels have remained too low....you are undermedicated and have ample room to increase T3 while remaining in range.

Is your dose 112mcg Levo plus 5mcg T3?

Have you tried reducing your levo and increasing T3.

Are you prescribed T3?

5mcg T3 is a tiny amount

It took me a long time and a lot of misery to reach the dose that suits me...75mcg T3 only. I was not tolerating levo.

I understand how you feel it can be a really hard slog and it can feel like a very lonely place to be. No wonder you feel lost.

Are you self medicating, can you change dose independently?

It could be that your body is telling you that you need more T3 when you feel angry....I used to be like bear with a sore head sometimes until I increased my dose. Undermedicated can feel like overmedicated....sounds crazy but it can happen.

Not sure how my understanding husband coped sometimes, thankfully he did. He always just said " but you are unwell" we need to get this sorted.

You've probably been told your results are normal ...end off! In reality that only means they sit within the ref range. ...not helpful. Your results need to be optimal for you which means you are taking enough replacement hormone to make you feel well. Medics forget that we are all different with different needs, we're not machines that come with an instruction manual!!

Sometimes you just have to follow your instinct, take your courage in both hands and jump!! I suggest you reduce levo to 100mcg for 2 weeks still with 5mcg T3, see how you feel then add another 5mcg. and let that settle for a couple of weeks then review the situation. It will take time to titrate to your therapeutic dose. We're all here to support you.

If you monitor your heart rate it will help you check that you are not overmedicating...it may rise slightly at first but should settle again.

Sorry long post but hope you feel assured that you haven't reached the end of the road....just hit a nasty pot hole along the way! I felt like giving up at one stage...so glad sheer bloody mindedness kept me going and much support from here.

Chin up, you are not alone here.

Take care

DD

I was on a lower dose of T4 with a higher dose of T3. Did nothing.

What was the higher dose of T3?

I was on 100/15

Room to increase T3 further then.It's often trial and error I'm afraid and I understand how scary that can be.

Time to sleep now.

I couldn’t tolerate 15 T3, I will not take 15 T3 again.

Batty1 profile image
Batty1 in reply to Meanbeannyc

Have you tried splitting t4 and t3?

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

What you mean splitting?

Batty1 profile image
Batty1 in reply to Meanbeannyc

Take 1/2 in the AM and other 1/2 in the PM

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

What’s the reason for that?

Batty1 profile image
Batty1 in reply to Meanbeannyc

I split my dose so I don’t over load my system with T3 and make myself jittery.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

T4 makes no difference tho.

You’re on 10 T3 right? Yeah I’d break up 5 and 5

Batty1 profile image
Batty1 in reply to Meanbeannyc

That’s totally up to you how you decide to take your meds for me personally I like to take (1) 50mcg T4 with (1) 5mcg T3 in the morning and take the final 2 pills late in the afternoon and I do feel like T4 is important to take along side of my T3 since I have no thyroid.

Have a nice day!

Thanks for everything DippyDame

Don't think I've helped really!

I'm afraid we sometimes have to go through a really miserable patch until we reach a therapeutic dose.

Your body needs to adjust and get used to additional T3, it takes time especially if T3 has been low for some time.

The horrible feeling is your body adjusting I certainly had to tough it out before I felt any improvement

You have probably read all sorts of scary things about T3, a lot of it is exaggerated, research proves this ....your heart will cope with very low, slow increases and your bones won't crumble!

pubmed.ncbi.nlm.nih.gov/269...

T3 is important to your wellbeing. Every cell in your body needs it in a constant and adequate supply otherwise we suffer.

Don't give up, by trialling increases, and what that involves, you have nothing to lose but ill health.

I honestly dgaf about my heart or bones if I can function

Well somehow you are going to need more T3 in your tissues

It took me nearly 3 years to reach a level where I can function....not 100% but much better than I did previously. Along the way I often felt really dreadful but I knew I had 2 options....keep titrating or give up and end up bed ridden like my grandmother.

Your reaction to T3 may be your body telling you that it needs more. Are you increasing very slowly and in tiny amounts? Too big a dose can " shock" the body.

Have you tried reducing levo to say 75mcg with 5mcg T3.

Maybe it's the levo that is the problem, not the T3

I cannot tolerate levo

It is super frustrating but it takes time and patience.....been there!

When I was on a lower dose of T4 with the higher T3 I felt awful, when I was on 100-100/112 my migraines were so bad that I was vomiting. Upping the T4 made me feel better. No more migraines on the higher T4.

Oh dear, poor you.Have your medics ruled out other possible causes?

Hope you find a way forward.

Sending a thyro-hug.

Well they resolved with a slightly higher dose of T4. So that’s that. LOL.

I understand upping T3 is scary and the feeling can be not great. But personally it was on the way back from 100/15, a dose that made me feel awful, that I found my sweet spot: 75/35. I got NOWHERE until I hit at least 25 T3. Just my experience.

That’s way too much T3 for me. I was raging out and had cystic acne and breathlessness on the higher T3.

Fair enough! Like I said, I happened on my personal dose as I was slowly titrating down my T4 and up my T3, I just meant it's always possible that slow, patient titrating one way or the other could land you on yours. Doesn't mean it's a good time, of course it's awful, and you know your own body - of course you know when something feels wrong.

I think it’s the weather for me...

When I get really cold I feel awful. Climate here is funky.

radd profile image
radd in reply to Meanbeannyc

Meanbeannyc,

'That’s way too much T3 for me. I was raging out and had cystic acne and breathlessness on the higher T3'.

That could be your answer. Don't forget all hormones work together. Have you had sex hormone levels checked (ie testosterone, oestrogen, etc)?

Meanbeannyc profile image
Meanbeannyc in reply to radd

What could be “my answer”?

I have not had those things checked in a long time, no.

radd profile image
radd in reply to Meanbeannyc

Meanbeannyc,

Sex hormones play a role in influencing our emotionals. Think how weepy, impatient, cross we can feel with PMT, menopause, etc.

Cystic acne is usually due to too much oestrogen, testosterone, etc. Aggression is known to be exacerbated by high testosterone and T3. Think of body builders.

As well as a hormone T3 is a neurotransmitter (brain chemical messenger) much like adrenaline. Introducing T3 with high testosterone could be encouraging dopaminergic mechanisms that play a role in the formation of aggression.

If this were to be the problem, then lowering testosterone should allow a peaceful T3 raise.

Meanbeannyc profile image
Meanbeannyc in reply to radd

How to lower testosterone? I’m a tiny 36 yo female LOL

radd profile image
radd in reply to Meanbeannyc

Meanbeannyc,

Me too, except am a lot older. Wish I was only 36 😊

Low thyroid hormone reduces the proper functioning of the female reproductive system by reducing the synthesis & metabolic clearance rate of hormones. Therefore, it is not because you are making large amounts of testosterone but it is building in your system.

I had elevated testosterone and with the help of a doctor lowered it by addressing imbalances in oestrogen & progesterone. Imbalances in sex hormones are extremely common in women with low thyroid hormones and why they may suffer abnormal menstrual patterns, conditions such as polycystic ovarian syndrome, infertility and miscarriage.

You will only be able to eliminate or address possible sex hormone imbalances by having them tested.

Exactly this... I’m on 150/25. 5 is a small dose.

Did you try T3 in one dose? Might be you need a decent amount in one go to get to your body on a cellular level.

I never know which to increase. I cannot tolerate that much T3.

25 is equivalent to 100 T4

I'm so sorry, Meanbean... I know it can be so difficult to cope. We are all here for you. Sometimes when you feel helpless and exhausted, it can be painful to hear that your dose needs adjusting or to 'keep going, don't give up', even if those are completely reasonable suggestions! Sometimes, at least for me, you just need to rest...allow yourself to feel how you feel for a little bit first. We'll be here to help you unload those feelings until you're strong enough to keep up the journey at your own pace xx

Meanbeannyc profile image
Meanbeannyc in reply to lau99

lau99 you’re always so mature about these things.

I know exactly how you feel, I’m in my third year of trying to get things right. It seems upping t3 for me gives me bad headaches. I’m on 100mcg levo and 10 t3 and have good weeks and bad weeks. I have just come down from 12.5 to 10mcg t3 again as 6weeks of feeling unwell and bad heads I couldn’t cope. I just feel I’m going to get on everyone’s nerves putting bloods up every 6/8 weeks. Total thyroidectomy in 2018 sometimes I wish I’d never had it done, I live on my own like many others and it’s scary. All the best to you. I’m sure you will get there in the end.

Meanbeannyc profile image
Meanbeannyc in reply to Dustpan

TT for me July 2019. Idk what to do with myself anymore Dustpan . Some days are just utterly miserable and painful. I can’t cope.

Dustpan profile image
Dustpan in reply to Meanbeannyc

I am so sorry Meanbeannyc it is really an uphill struggle some days, and dr’s just don’t understand how you feel because they are not in that position and don’t really have much clue about thyroid. There are some good endos out there but they are few and far between I’m afraid. I can’t seem to get past 100/10 ratio and I know I can feel better but it’s the dose changes that make me feel ill even though Im a poor converter and could do with more t3 I struggled with 12.5 and couldn’t take it any longe4 after 6 +weeks, my legs were feeling weak and I was nauseous and dizzy. Iv had about a week of 10 t3 and I’m feeling a bit better but have a slump at about 3pm (circadian rhythm) so tired. If you want to just chat anytime them message me dont go through it on your own, I think I know what you going through.x

Meanbeannyc profile image
Meanbeannyc in reply to Dustpan

Thanks Dustpan .. same to you, u can always reach out to me.

I am like you with the T3, where I get weak muscles and have some breathing problems, etc. maybe I just took too much last time. Idk. Nervous to start increasing it again.

Dose changes are hard, that’s why current endo wants me to kinda just sit on this for now.

Dustpan profile image
Dustpan in reply to Meanbeannyc

I try and increase as suggested low and slow but with me that doesn’t always seem to work. Maybe I should try lowering t4 and upping t3 but I’m going to wait a bit I think.

Meanbeannyc profile image
Meanbeannyc in reply to Dustpan

That’s what sucks. The waiting game, plus symptoms always overlap.

shaws profile image
shawsAdministrator in reply to Meanbeannyc

If someone has had a TT, I think they should be prescribed NDT (natural dessicated thyroid hormones) at the very least as it contain all of the hormones a healthy gland would provide. or T4/T3 combination.

Unfortunately, despite it being the very first thyroid hormone from 1892 onwards that saved lives and people did not then die through their symptoms the 'Powers that Be' in the UK withdrew it - without any discussions and leaving those who were well upon it ' high and dry' and nowhere to turn to get the hormones that allowed them to recover their health. They also did the same with T3.

There was no discussion with those who've been diagnosed or with support groups and I think there should have been. Despite the 'experts' appearing to be knowledgeable we, the patients, find out they know little at all about how symptoms can be very disabling.

It is probably because thousands do fine on levothyroxine that we, the 'forgotten' due to remaining clinical symptoms - not fit enough to work - may lose their livelihoods and the professionals seem 'not to care at all' as it is not happening to them.

We need more Dr Skinners and Dr Peatfields who knew everything about how to diagnose/care without the need for blood tests at all (that would save thousands of ££££s. They healed their patients, were kind and considerate and that was their aim - to restore health and wellbeing.

I was very fortunate to consult both of these doctors and I doubt there's few others who can treat/help/concerned in these 'modern' times - even if there were they wouldn't be allowed to by their 'organisations' I think.

If we have the money - there's no problems. Just look at how well Mrs Clinton and Oprah look and they have the money. If they hadn't improved the endocrinologists wouldn't receive their large payments.

DippyDame profile image
DippyDame in reply to shaws

"even if there were they wouldn't be allowed to by their 'organisations' I think."

There are good medics but their hands are tied behind their backs by guidelines.

The decision makers seem to confuse "guidelines" with "rules". My GP more or less admitted to this.

A hefty dose of good old fashioned clinical evaluation is what they need to be taught!

Try a small increase after each test? Sorry couldn't quite get if you've been doing that, but you do look like you could do with one. Try another 5 lio.

Meanbeannyc profile image
Meanbeannyc in reply to JAmanda

I never know which to increase, the labs are wonky. That’s why I’ve been testing at all diff labs on same dose for the past few months. Seems like the tsh is the only thing that’s been consistent throughout all of the labs.

SlowDragon profile image
SlowDragonAdministrator

2 months ago post shows very low vitamin D and low ferritin

healthunlocked.com/thyroidu....

No folate or B12 tested

For levothyroxine or T3 to work well we need GOOD Vitamin Levels

What vitamin supplements are you currently taking

Just Vit D atm.

SlowDragon profile image
SlowDragonAdministrator in reply to Meanbeannyc

So you need to retest vitamin D 2-3 months after working on improving

Get folate and B12 tested

Presumably you have increased iron rich foods in diet to try to increase ferritin levels

Have you had coeliac blood test. Considered trying strictly gluten free diet?

Had celiac done a while ago. All negative. Just recently had rheumatoid panel done as well. All negative.

SlowDragon profile image
SlowDragonAdministrator in reply to Meanbeannyc

What was reason for thyroidectomy?

Always worth trying strictly gluten free diet, especially with any autoimmune disease

Graves’ disease. Recent test for TRAB and TSI just showed antibodies have lowered to undetectable levels.

SlowDragon profile image
SlowDragonAdministrator in reply to Meanbeannyc

So with Graves’ disease, even after thyroidectomy it’s always worth trying strictly gluten free, 3-6 months. See if it helps.

May help improve low vitamins, though you’re still likely to need to supplement vitamin D continuously

Likely to need B vitamins, but get tested first

Hi Meanbeannyc,I'm so sorry you feel like this. It is a tough road the one we're all on.

Looking at your results your T3 is consistently low. Which means you're not converting T4 to T3. And taking vitamins or eating the nutrient rich foods helps best with this. All the T4 in the world doesn't help if you're not converting it to T3. But I hear you re reactions to T3. I have the same. So I've got my T4 meds on the go and currently am trying to increase my vitamins to help convert to T3. (I have to do this by diet as I have reactions to supplements!)

Yes taking smaller regular T3 helps reduce the impact but sometimes even that is too much, so sometimes it's vitamins we need rather than T3 direct so much. Try it and see.

We have to just keep trying xx even when it is so incredibly hard. Listen to your body and know what's best for you.

Hugs

Oh Meanbeannyc

I sympathise. I still lousy on 75/20 and my ft3 is higher than yours so I can only imagine how rubbish you feel.

I can say that t3 was totally pants for about 8 weeks for me. I found it very hard and persevered. I know you have had loads of comments saying more or less the same.

I wish you’d try raising it again so you can start to get a higher ft3. You have to have faith that you can feel better as others have trodden this path and know just how tough it can be.

Sending you lots a positive wishes to you x.

Ultimately it's the T3 that matters. Some people can take levo (t4) and it increases both t4 and T3 equally. But others need to add T3. Your results vary a bit (everyone's do for all sorts of reasons) but your T3 is always low in range. I'd increase increments of 5mcg every 6 weeks. Choose one company snd always use them, taking blood test in same way.

Meanbeannyc profile image
Meanbeannyc in reply to JAmanda

I’ve been sticking with that quest lab since those have really been the most consistent on the same dose. Albeit those results should imply I feel normal, when I am far from it.

SlowDragon profile image
SlowDragonAdministrator in reply to Meanbeannyc

When taking T3 many people need to take small doses 2, 3 or 4 times through the day

Only increasing slowly

Eg if currently taking 5mcg waking now

Adding 2nd 5mcg dose approx 10-12 hours later

Retest 6-8 weeks after each dose change

Dustpan profile image
Dustpan in reply to SlowDragon

Or split them gradually from 2.5mcg see how it goes then add another 2.5

Kimkat profile image
Kimkat in reply to SlowDragon

If you do manage to get hold of T3 and take it at different times during the day, do you need to be aware of other meds or food, like you do with Levo?

SlowDragon profile image
SlowDragonAdministrator in reply to Kimkat

It’s not as fussy.

Avoid food 30mins ether side of taking it ideally

They don't imply that though. Your T3 is only 21% through the range. (The range is 1.9 wide and you are 0.4 into it.) You need to be in the top third to quarter of the range.

Meanbeannyc profile image
Meanbeannyc in reply to JAmanda

The labs look funky at different labs

Meanbeannyc profile image
Meanbeannyc in reply to JAmanda

Isn’t everyone’s FT3 lower than their FT4 on T4 only?

JAmanda profile image
JAmanda in reply to Meanbeannyc

No I dont think so. But youre taking T3? You need more, I'd say.

Hi. I’m sorry I don’t have anything factual to add but I’m sorry u feel so low. I’m with Graves myself. There are good people here for u. You are not alone. Not ever. How you feel is normal. Frustrated and constantly unwell to the point it wears u down. We here understand that more than others ever will. I personally think you are very courageous and incredibly strong. It takes courage and strength to reach out and say “hey, I’m not ok, can u help me?” I can’t make it better but understand how dark and low you can get as a human being. Lift your head and talk here. You are amongst friends

Meanbeannyc profile image
Meanbeannyc in reply to NIKEGIRL

I wish someone would actually help me though. :(

NIKEGIRL profile image
NIKEGIRL in reply to Meanbeannyc

I really do understand more than I would like to admit. It’s sad to say. My T3 conversion is so high. I am unable to get T3 into range without T4 going under range. I have felt suicidal and utterly depressed. I am not experienced as to what u r going through but the emotions are the same as yours. It’s so hard and it wears u down to nothing. You are stronger than u know. Somehow giving up is not an option with our situations.

NIKEGIRL profile image
NIKEGIRL in reply to Meanbeannyc

Because u have lost hope let someone else hold the hope for you until u r ready to take it back for yourself. Whether that’s a dr, a therapist, a partner, a friend, whoever. Without being aggressive or rude You sound depressed. Who wouldn’t be. Im depressed if that helps. Probably doesn’t. There’s no shame in it. Personally I don’t agree with anti depressants. Last week I was offered them and declined them. I prefer to see a professional therapist. I do think there are options open to you but only u can decide what it is you would like to do going forward. How u feel is giving u a message that everything is not ok. It’s now about how to deal with that message. You can either ignore it or take action. Trust me ignoring it only helps u out now. Taking action requires a lot more strength but in the end will be a better result for u. You feel like this because your body is not in the right place. None of this is your fault but lean on your family and friends and get them on board so they can take some of the load off you and help you for when you feel like it’s all too much. In no way have I written this to offend you or make you angry. You need some help from family and friends right now to formulate a plan going forward and how to get you through this.

Meanbeannyc profile image
Meanbeannyc in reply to NIKEGIRL

Doctors, friends, family... all say my lbs are fine, tsh is low, I should be feeling great! Symptoms are in my head. You have other issues going on, etc.

“Your symptoms can’t be THAT bad with such a low tsh”

NIKEGIRL profile image
NIKEGIRL in reply to Meanbeannyc

Well my experience is that it is not all in your head. I think seeing a mental health care provider would be good. They will be unbiased and objective. No one can tell you how u should feel. Numbers are just that numbers. You are a real human being with real feelings and emotions and numbers don’t account for everything. What would you like to do to get u moving forward? T3 will suppress your TSH so that is unreliable. So those comments are not helpful.

Meanbeannyc profile image
Meanbeannyc in reply to NIKEGIRL

I’d like a higher dose.

NIKEGIRL profile image
NIKEGIRL in reply to Meanbeannyc

Then that’s what u should work on. You have received great advice here from great people. Now I’m no expert. But slow and steady is what I have read. Is it T4 or T3 you would like more of or both? And how will you achieve this? What do U expect this dose increase will achieve for you? I’m asking these questions without prejudice or malice.

Meanbeannyc profile image
Meanbeannyc in reply to NIKEGIRL

I never know which to increase. I’d like more of both.

NIKEGIRL profile image
NIKEGIRL in reply to Meanbeannyc

I can’t give advice on which one to increase. I don’t have that type of experience. Slow Dragon, Helvella, grey goose, jim111 and Shaws they are all well versed and way more experienced than me

Hey there Mbeannyc :

I'm Graves post RAI thyroid ablation in 2005 becoming very unwell in around 2014 and with no real answers after going around various hospital departments was discharged in 2016 with just a low ferritin flagged and referred to by my doctor as a conundrum.

Housebound I thought maybe " the Graves had come back that I was treated for in 2004 " and bought this little laptop, a few good books, and luckily for me landed up on Thyroid uk.

I spent over a year building up my vitamins and minerals and alo started taking adrenal glandular and having been refused both Natural Desiccated Thyroid and T3 by my doctor and my hospital endocrinologist because my TSH was at 0.01 in 2018 I decided to self medicate.

I purchased both T3 and Natural Desiccated Thyroid to give myself all the other options.

A T3/T4 combo worked, in that my mental and cognitive function improved but I couldn't raise above 6.25 T3 / 100 T4 and felt a little turbo charged but better for the T3 than not.

I couldn't source the same brand T3 Greek UniPharma and the Mexican brand I purchased in bulk gave me terrible headaches and I couldn't use this T3.

So, I gave the NDT a go and it was so much better for me - it seems " more complete and softer on my body " and a very easy transition and I'm now in my third year and am much improved.

I'm not 100% - I don't know if that's possible after Graves and RAI, but this is certainly the best option for me, and I tend to run myself slightly hypothyroid as I still find it a fine line between my hyper/hypo symptoms.

My dose is relatively low to what I read on here - 1+1/2 grains so just 57 T4 + 13.50 T3 :

I think if I have to go back on synthetic thyroid hormone replacement this is where I may well start my dose of T3 and T4 : whilst I appreciate these 2 options are very different " animals " I just think I may now have better starting point than a few years ago.

I very much doubt I would have found this dose myself on the synthetics as I would have thought I couldn't have a T4 that low and be ok ???

Don't know if this helps - it's just a thought - and obviously if you are not self medicating you may not have the freedom to adjust your dose too much.

Hey, please don't loose hope! It has already been mentioned and I totally agree: I think your T3 dose is far too low. In most cases, TSH is very surpressed when you have enough T3 (in form of medication) , something like 0,01 and its normal. Otherwise your body signals that there still is not enough T3. And as your T3 is rather low in comparison to T4, this seems to be the case. I know it can difficult to find a doctor who knows enough about T3, but I highly recommend Paul Robinsons "recovering with T3". It give you lots of information to persuade your doctor. Maybe he even reads it himself. Mine did, surprisingly.

Maybe you even need T3-only if you have a conversion issue and in this case you won't feel good until all T4 is cleared out of your body. This does not have to be the case, but it happens.

Lots of luck and get better soon!!!

idk what to do anymore. I just never figured out how to get well.

The only doctor that knew anything about T3 put me on too much on top of a high dose of T4 without doing labs and I freaked out.

Hi, I had RAI in 2018 cos of graves. Still not 100% but don't think that is achievable as previously stated as we do still have graves which will flare up from time to time regardless what we do. I would look at your vitamins as advised by slow dragon. My B12 was very low, though still slightly under after my last blood test (went from 40 up to over 300) it has made a huge difference. I'm still working on ferritin and vit D but raised my vit d slightly which also makes a difference. Have you tried different brands of levo and lio? I can only take certain brands. I'm trying to get lactose free at the moment as think I'm lactose intolerant, I've also given up gluten. It is a mind field but never give up. A strong mindset also helps (though its very hard to keep all the time).Good luck, we are always here xx

Meanbeannyc profile image
Meanbeannyc in reply to Hookie01

I’ve only been on brand name Synthroid and Pfizer cytomel. That’s all they prescribe here, brand name Synthroid and Pfizer cytomel or tirosint is the other option for people without thyroids when it comes to T4 meds. For NDT, it must be armour only.

Meanbeannyc profile image
Meanbeannyc in reply to Hookie01

My TRAB and TSI just plummeted, so Graves is no longer active.

I'm so sorry you feel this way. I can relate as I have lost hope so many times. I'm also struggling to get better and keep getting disappointed. Even with optimal blood lab values, on T4 only I ended up with fibromyalgia. I thought I needed some T3 in my treatment, so I changed to NDT (Armour) but didn't get better. Now I'm on Metavive and not much has changed. I also added Adrenal Cortex to correct low cortisol levels, which helped a little. I did not tolerate T4. Whenever we tried to increase it to get my labs to optimal levels, I reacted very badly, as if I was extremely overmedicated on it, which I wasn't - similar to what's happening with you and T3. When I ended up getting overmedicated, once on NDT and once on Metavive, in both cases I felt much less overmedicated than on normal T4 doses. It makes me think that perhaps because these are more natural, my body tolerates them better. So maybe that could be an option for you?The other thing is, even if one's blood thyroid hormone levels are optimal, it doesn't mean that the thyroid hormones are getting into the cells. There seem to be a few different ways that things can go wrong in the process of getting the hormones from your blood to your cells. This article explains more: forefronthealth.com/overcom...

I really hope you feel better soon Meanbeannyc. Don't loose hope! The world is full of stories of people who have completely recovered from all sorts of difficult and life-threatening diseases. Feel free to send me a message whenever you feel like having a chat.

Meanbeannyc profile image
Meanbeannyc in reply to Canu

I have completely lost hope.

Canu profile image
Canu in reply to Meanbeannyc

Come back here and write to us. So many good and helpful people on here. X

It’s so hard when struggling on through and you feel like you are literally getting nowhere. I have had years of low grade fatigue, head fog, not being able to string a simple sentence together. Feeling like I’m pushing as hard as I can to be ‘normal’ and people telling me I need to do more. Doctors and specialists telling me nothing wrong with me and offering me dead end diagnosis like IBS and CFS. Once tried special diets, different protocols for supplements etc. I’d lost all hope of ever feeling any different. I had some good gains when I changed diet etc but it was hard to sustain and the feeling of being well didn’t last long. I can absolutely feel your frustration. It’s unfair that we are suffering like this.

Last year I found myself a functional medicine doctor in the UK. In 10 months she has changed my life. I’m still not recovered but I’m on the journey. My experience is so very different from yours but I don’t know if you have the option to find a functional medicine doctor?

Even after our first meeting I felt positive. She listened to me for over an hour, agreed, understand and accepted me. That in itself was worth every penny. From there it just got better. I’m on T3 15mg a day in 3 doses because of her as I’d suffered with hypo symptoms for years but no GP ever even mentioned it as my TSH and T4 were in range. My hypo is down to inflammation and other issues and she says in two years I probably won’t need any thyroid meds. My issues all stem from heavy metal poisoning which I was pretty sceptical about. However the more I looked into it the more I know it’s my overriding issue. Having metal fillings in my mouth, living in Africa as a child (they spray crops with silver), living in houses with lead pipes and lead paint, eating too much tuna. My body is unable to detox well due to my methylation pathways being blocked so where as most people can detox enough to live well my body just retains it. I even have arsenic which will be from rice because my body can’t detox it. I’m following a very particular protocol to help with eliminating all the mercury but it is long and slow as it’s the safest way. I’m still functioning albeit my adrenals are practically shot from doing a protocol that limits salt intake) so I have little energy to exercise but my brain is functioning and I can live life as simply as possible. Had I stuck with regular GP’s I’d be getting nowhere. Sadly it’s all costly as the tests alone have cost me £1500 and her apt’s which I keep to a minimum are not cheap. For those of us who are really struggling we will find it hard to get better with these traditionally trained specialists. We need someone who understands how all the body works together. I’ve improved so much this past few months and I see more hope than I ever have.

I guess what I’m trying to say is that there is something out there that will help but it’s like finding a needle in a haystack. Don’t give up you will find it.

Yes but other factors come into play. Seasonal changes and hormonal factors.

Hi there. My Grave’s Disease was diagnosed in 1986 and my thyroid gland ablated with RAI shortly thereafter. On Synthroid alone I felt absolutely terrible. Could barely function. My doctor suggested trying desiccated thyroid (Armour), but eventually the T3 in that became too over-stimulating before I could get my T4 up high enough. I ultimately landed on a combination of Synthroid and Armour that improved things dramatically. I really needed the T3. I had tried a round of Synthroid plus Cytomel, but found the Cytomel to be way over-stimulating. For the last thirty-five years I have been on some form of animal thyroid plus Synthroid. Although the changes and recalls with the NDT have at times been frustrating, for the most part it is by far the best combination I have landed on. It takes some trial and error to get it right, but it has been well worth it. Hope you get some relief soon!

That’s the thing, if I add ndt to my T4, I’m also increasing T4. I have cytomel 5mcg. I have ndt and I have Synthroid 88-112 and tirosint 88-100

Sorry, not sure I was clear as to what I use. I don’t use Cytomel and I don’t use Tirosint. My doctor and I went through a ton of trial and error and finally landed on just enough Synthroid to get my Free T4 at about the midpoint of the range combined with enough Armour Thyroid to both bump my FreeT4 up just a little from the midpoint and my FreeT3 to higher than the midpoint. Sometimes the Free T3 would be much higher, even to the top of the normal range, but I seemed to tolerate it pretty well. This was not true with the Cytomel, where with even low doses I felt like I was jumping out of my skin. It was terribly over-stimulating. The T3 in the Armour is much gentler than the T3 in Cytomel. The trick for me was to get the right ratio of T4 to T3 using the Synthroid/Armour combination. The year after my thyroid ablation was horrible, as I kept trying the Synthroid alone in various doses. The combo of NDT and Synthroid I use took awhile to figure out but has been well worth it for 35 years. Feel free to private message me for more details. Hang in there, as you will get this figured out.

My old endo suggested that too.

I tried for months and months with T4 and T3 and never got well. I went onto NDT , thyroid S and felt well within a month. Don’t give up hope, you will get there. Also your T3 still looks low to me though I am not medically trained, just a fellow thyroid sufferer !

Meanbeannyc profile image
Meanbeannyc in reply to Mandcol

I’m a little nervous to switch to NDT. Seems like a huge T3 ratio to T4.

Canu profile image
Canu in reply to Meanbeannyc

You could get bovine NDT which has less T3 and more T4 than porcine.

Hi again, MeanbeannycSo as well as my reply above, I also can relate re the T3 angry and breathlessness. Not only do I get this from too much T3 but I also get it with too much b12!! I find with both it helps me to eat potassium rich foods/drinks. I know b12 reduces potassium, so taking b12 supplements can cause aches and pains and breathlessness etc as lower than optimum potassium symptoms.

Maybe try something potassium based and see if it helps. Lower than optimum potassium also produces hypothyroid symptoms.

Hope this helps

I think this comes from b12 and T3 increasing metabolism, getting everything whirring up into action within. And if we haven't got the resources to pull on to feed this whirring up we end up exhausted/breathless and angry. Like we're missing something to draw on! So maybe like with me and potassium there's some nutrient you need that gives you the core energy to draw on once everything starts whirring up into action. I've read how getting your thyroid levels optimal changes how your body draws on and uses nutrients. This is just what I sense goes on in me when I take these energetic things like b12 and T3. Maybe it's similar for you?

asidist profile image
asidist in reply to tinkerbell22

so interesting, had never heard of this interaction between b12 and potassium before. thanks for sharing.

tinkerbell22 profile image
tinkerbell22 in reply to asidist

Hi asidist, I found this out by searching and searching the internet for why I was having problems taking vitamin b12 supplements. I kept getting breathless and heart pain. Eventually, and it took a while, I found the little nugget of info that b12 lowers potassium. Once I found that, I found loads of info on it online. It seemed like you needed to know what to look for before finding the answers lol.

I'd always found potassium foods and drinks helped me feel better. But I didn't know there was a logical reason for it.

Apparently a lot of people take b12 and end up with muscle cramps. But increasing potassium foods and drinks can really help with this.

Potassium is like thyroid levels. You can be in range but not at your optimum point and suffer with symptoms that a doctor wont pick up through testing.

It's also really hard to get enough potassium through your diet alone. The recommended amounts are enormous per day. Of course some people have to take care not to have too much potassium but for me I need as much as I can get, so then have to take care with b12.

I did a hair test analysis of my minerals to see I definitely needed potassium increasing

Xx

SlowDragon profile image
SlowDragonAdministrator in reply to tinkerbell22

That’s really interesting re B12 and potassium

I found I needed to up potassium rich foods after adding vitamin B complex

Banana for breakfast helped enormously

Hi SlowDragon! So glad this has helped you too. Did you find this out naturally?I can't remember exactly what I searched on to find this nugget of info but once I found it I keep finding again lol.

Low potassium and hypothyroidism have a lot of crossovers in symptoms.

Bananas are a great source. So is orange juice for a quick fix, carrots, pistachios, dark chocolate, mango, and potatoes and so much more Xx

Thank you for furnishing me with an excuse to stuff dark chocolate! I’ve been taking B12 and I’m puffing up the stairs a bit- lots of dark choc and the odd banana 🤔 iI like pretty much everything on your list below too thanks for sharing this really appreciated. Thank you 😊👍

Hilarious :D though I'm sorry you're puffing a bit! Enjoy the dark chocolate!! I've found I can bake it in the oven with other high potassium foods like chopped pistachios or dried apricots for an extra yummy mix. I hope this helps you, it's worth a go! Xx

Brilliant!

May I ask you what drinks and food helps you bring up your potassium levels?

Hi jgellissSo these are some foods/drinks I try for potassium, orange juice for a quick fix, carrots (a bowl of carrots also gives a lot of vitamin A which is crucial too), pistachios, dark chocolate, mango (I buy pureed baby food mango!), and potatoes and so much more. Spinach is great but needs cooking first for thyroid health. Other good ones for potassium are butternut squash, coconut milk, porridge oats, apple, dried apricots, parsnips, avocado, tomatoes, beetroots and their greens, houmous. The list goes on. Even tho it's in so much it's really hard to meet the optimal amount per day. So just try to find things that really increase it. Hugely nutritious foods in their most natural form Xx

Thank You So Much . Your very informative and very knowledgeable. This information is so helpful .

asidist profile image
asidist in reply to tinkerbell22

a clutch find for sure tinkerbell - i think that could help a lot of people.

i generally eat lots of fruits and veggies (well except recently due to pollen food allergy syndrome that often hits at this time of year) but agree it can seem quite difficult to get adequate potassium through diet alone, and i know potassium supplements are not generally recommended. can i ask how you limit your b12 to in order to be able to keep it balanced with dietary potassium? and do you find just specifically seeking out potassium rich foods to be sufficient for meeting your needs?

im still trying to pinpoint if the new b complex i switched to and take every 2-3 days (thorne basic b) is contributing to extra fatigue i often feel these days, but it’s so difficult to pinpoint things (especially with my hashi’s brain) as i seem to react to so much. based on my difficulty tolerating various supplements and everything i’ve learned over the years about potential adverse effects and complications associated with supplements, i’m not very comfortable with the idea of having to supplement w synthetic nutrients at all, and feel torn with the knowledge that people with hashi’s tend to have low stomach acid and difficulty absorbing much needed nutrients (on top of the difficulty of getting them in our diet in the first place!). i do wonder if having a highly nutritious diet might be enough for at least those who have achieved optimal thyroid hormone levels - supposedly having enough thyroid hormone (t3 in particular) should resolve the issue of low stomach acid? i’m hoping so!

tinkerbell22 profile image
tinkerbell22 in reply to asidist

Hi asidistSo sorry you have trouble with allergies and food! I used to be allergic to peeling potatoes (lol I'm not joking, the spray off the peel set me off because of a pollen allergy) and I used to have hay fever too until I worked with a homeopathic remedy 😉 I'm still limited in a lot of foods but at least I can peel spuds now :D

Sounds like you'd normally get quite a lot of potassium with your diet as it is. But yes I haven't found a way to get the full amount so I just try to eat as well as I can and push the nutrients up as best I can. I try to find foods highest in potassium that I can tolerate. There's an app for nutrients which helps me log what I have.

Yes potassium supplements cause digestive upset. I do have a bottle on hand in case I need it but I usually try natural options. There's only a tiny amount in supplements too because high potassium is as dangerous as low potassium.

At the moment I can't seem to take even low dose b12 without getting major problems with potassium dropping. So I'm trying to stick to diet for both b12 and potassium. Balancing it that way seems to stop big leaps. But it's not yet enough b12 for my needs. It's a juggling act, and buying and preparing food isn't too easy but it's better than the alternatives. So it's not a simple solution but for me it's my only choice currently.

Yes absorption of vitamins and minerals is an issue too! I had Terrible trouble with digestive upsets for years then discovered through a hair mineral test that I had a heavy metal poisoning which causes stomach upsets. This led me to homeopathy to gently try to detox and heal. As a result I've mostly stopped the digestive upsets so I can at least keep my food!! I'm hoping this helps me absorb more nutrients. It certainly ought to.

If you're not into homeopathy, I found manuka honey helped my digestive system tons!! A teaspoon of manuka in a drink once a day really helped me. Perhaps that would help you too with absorption and stomach acid? Might be worth a look online about it.

I did try just focusing on my thyroid meds but it didn't seem to help my stomach, but maybe because of my heavy metal poisoning. But for me my journey has taken me to the importance of nutrition through food alongside my T4. And then hoping this will help me convert my T4 to T3 naturally.

Hope this all helps xx

Thanks for pointing this out. I have the same reaction to B12, even though I have to take it for the rest of my life. I do try to take it every three days instead of daily and that seems to help.

Hi Donna5658. Ah no I'm so sorry you have this too! That's good you found a way to manage it. Maybe try the extra potassium too and see if it reduces the symptoms. Glad it was useful to know this! Xx

Thanks Tinkerbell. My potassium levels are fine. I was responding to your comments about Vitamin B12 being terribly over-stimulating. I always warn my husband that it is “a vitamin B12 day,” so he knows my grouchiness is not about him. It seems to put me into a hyper-metabolic state. More rapid heart rate, jitteriness and irritability. I have to have it, but it helps to have an explanation for side-effects.

I was very angry on 15. I almost lost my job LOL

Hi Meanbeannyc Do you find Any T3 medication triggers anger? Even low levels of anger? I have only been able to take a max of 5mcg T3 across a day. I'm super sensitive to most things. But I had to stop that too in the end . I'm on 100mcg T4 which seems to help but it isn't enough, I am still exhausted. I've been higher on T4 and it doesn't get any better for me either. Vitamins and minerals seem crucial to thyroid health. It seems like you can't work on one and not the other. They work together. So perhaps this is your missing link.

If T3 is still making you angry at all, even low level anger, then try tinkering with your diet or supplements to see if you can make that anger stop.

I recently looked at my general diet closely and saw what nutrients I was and wasn't getting. It was enlightening lol!! I found I had Huge gaps in my nutrition. So no wonder I've not been feeling well. I've started working on filling those gaps and I feel better for it. It feels to support my thyroid health and medication. We need to put the right fuel in our bodies for our medication to work.

Hope this helps xx

I was angry on the 15 T3. Not on 5.

Wow. This is so very interesting. When I take B-12 as you said I get aches/pain in my thigh muscles and hips. I was not aware that B12 can reduce potassium levels and therefore cause aches/pain. Thank you so much for sharing this very valuable information.

Hi jgellissSo glad this helps you too! I couldn't believe how hard it was to find such an important nugget of information! But I knew I was onto something and just kept digging. B12 is so crucial to us thyroid people but knowing this shows we have to support the b12 with other nutrients too. It can't be out of balance. So for you, maybe look for some yummy potassium foods and drinks you can increase in your diet to support the b12 you need too xx

I so sympathise with you. Sometimes when it's been a low time and things have felt hopeless I've found that making no more changes for a while is the best for coping mentally. I've found that taking supplement for B12 , D3 and K2 seem to have made a difference

Meanbeannyc profile image
Meanbeannyc in reply to cben

That’s what my current endo wants to do. No changes for a while. Sit on this shit forever

If you are in NYC as your name suggests, see Dr Minisha Sood. She absolutely CHANGED MY LIFE. I saw 7 ‘top experts’ in NYC over the many years before I crawled into her office last May. It’s a long story but I tried every single bloody med and combo out there and NOTHING worked. Nothing. I was on armour synthroid cytomel, brand only generic only, high doses low doses…she has me in Tirosint and 15 cytomel now. It took us a year to get me on the right combo, and I feel like I can move mountains today. She NEVER GIVES UP. She doesn’t take insurance but is the best investment you will ever make. Look her up. Look up her google reviews. She is kind. She spends HOURS with you.

I had absolutely given up by the time I met her in fact I walked in over medicated, shaky angry cynical. Snapped at her and said I didn’t believe she’d be any different than all the other clowns I’d seen. And she understood that. She HELPED. Tell her Sophie referred you if you want.

I requested an appt. thank you.

Canu profile image
Canu in reply to Meanbeannyc

Do let us know how you get along.

It also looks like you were on 200+ T3 at one point?

Yes I was. One doctor put me on 450. Can you believe this? 450. That’s not a type o. A top NYC Endocrinoligist. I felt like I was dying and he just added propanalol for my heart and said ‘increase by 25’.

That’s when I found Dr Sood. And mind you the other experts all thought 200, 250, 185, 275 was just fine. I felt like I was DYING.

Dr Sood only cared about making me better. I’m 48 and can now run, lift weights, sleep soundly again. I felt like I was having a panic attack for 6 years prior. Both hypo and anxious. My free t3 at one point was 37.1. (2.2-4.5)… I still had hypo symptoms and the doctor I was seeing said ‘take more’.

Can you share your current TFT results and your current dose?

Sure! Sorry what is TFT?

I am currently on 100 Tirosint and 15 cytomel. My Free T4 is top of range, and my free T3 is absolute bottom of range (but I feel so good, I really want to be off it) since reducing I have lost so so much body fat. I was 118lbs with 36% body fat on 250 T3 and since coming off I’m exactly the same weight but in 1 year gained 11 lbs muscle and lost 11 lbs fat and am now 17% fat. I really really HATE what t3 did to me. I lost all my muscle. I’ve had to train so hard to get it back. My TSH is still totally suppressed 0.1 which my doctor says is normal that it’ll take a long time to come back up. So we are just waiting. Since I feel good now she doesn’t want to mess things up by reducing more to get TSH up , until I’m ready.

I hope that helps it’s not very specific I’m sure I have my labs somewhere if you want specific numbers but obviously everyone is different.

Also I felt like dying on synthroid and thought that meant I couldn’t take t4, and levothyroxine (generic) made me gain weight really fast. But Tirosint is the opposite. For me. Everyone is different.

Tirosint and Synthroid are the same thing without the fillers

Yes, exactly. Tirosint is t4 with no fillers

I called for appt. receptionist was weird!!!

Your TSH is non existent. So was.mine for a long time with Graves Disease. Just want exactly are your symptoms that you feel lousy? TSH responds in direct relation to T4..NOT T3. I have researched this a lot and unless your pitituary is at fault it should produce more TSH when T4 is low. My endocrine head of the American Thyroid Association says TSH is a big deal looking at overall health. Your TSH looks supressed still as was mine with Graves unless I missed a TSH in normal range.

tattybogle profile image
tattybogle in reply to KevJenn

"Your TSH is non existent" .. Hardly ..... most of meanbeanny's recently posted TSH's are well within range and the 0.23 is barely beneath it.

TSH: 0.23 (0.27-4.6)

TSH: 1.2

TSH: 0.34 (0.27-4.6)

TSH: 0.57 (0.27-4.6)

TSH: 0.47

'Non-Existent' would be undetectable ie <0.001 . I'm not being deliberately pedantic .. it's just that it matters ...i've seen research showing LOW but not supressed TSH [0.04 -0.4] had NO increased risks for heart and bone outcomes over TSH in range [0.4- 4] from a long term study of patients taking T4....and while the risks did increase for TSH < 0.04 , some of these risks were still LESS than the risks for TSH >4 ....See this post for a link to it healthunlocked.com/thyroidu...

"TSH responds in direct relation to T4..NOT T3." ..... mmm ...test results seen here everyday would seem to contradict that statement. T3 usually seems to have a direct impact on lowering TSH . i can't believe T3 has no effect. How can you explain the TSH test results we see from people taking only T3 (with consequently low fT4 results) who also have very low TSH results..... they can't all have faulty pituitary's , so it must be the T3 lowering the TSH despite how low the fT4 is.

"My endocrine head of the American Thyroid Association says TSH is a big deal looking at overall health." ... Well yes many of them do say that ... but 'eminent' or not .. they are usually ignoring the evidence from research looking at FT4 and FT3 in conjunction with TSH , often they are just looking at TSH in isolation, without taking proper account of the associated fT3 /4 levels and the impact this has on results in research outcomes which can then be very misleading.

My tsh isn’t low enough!

isn't low enough for what ? .... sorry if i've missed the point :) it's a long thread .

Low enough for good health!

It doesn't HAVE to be lower than 1 for good health, ....it's just that it often is when fT4 and fT3 are at levels that make the person feel well.... but i'm sure there are loads of people who feel well with TSH where yours is on those results i copied above.. surely it's more about where your fT4 and fT3 and finding the ratio of T4:T3 that suits you than where the TSH level end up

Sorry you're feeling so lost ... this game really sucks ... i get it xx.

I still can’t function

Meanbeannyc profile image
Meanbeannyc in reply to KevJenn

T3 is actually very effective at lowering TSH. It’s 4x more effective at lowering tsh than T4...

Also, my tsh isn’t low enough.

Meanbeannyc profile image
Meanbeannyc in reply to KevJenn

My symptoms are.. muscle pain, joint pain, fatigue, swelling, cold.

Hi Meanbeannyc, I’m in a similar boat since having my thyroid removed in 2016 (cancer) and because of this cancer Im forced to have a very low TSH which for me also means every other level drops to join the party and if I add more T4 and T3 I plummet even further and then my body really starts to breakdown.... my most recent health hitch hiker is small fiber neuropathy with (no cause) I can’t wear socks, shoes, gloves because my skin feels like it’s on fire as soon as something contacts my skin mainly my hands and feet but I do get it wide spread and anemia which is a monster I had a (hysterectomy 17yrs ago) and I have anemia... I can’t wrap my head around this one!

I wonder often if this nightmare will ever come to and end so far it's not looking good. I hope you find some peace and solutions.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

I don’t think it will ever come to an end. My tsh flails wildly in the winter... coming from an extreme climate with 4 definitive seasons, this is a damn nightmare.

Batty1 profile image
Batty1 in reply to Meanbeannyc

🙁

Not in my case. I am a data scientist by profession. T3 has zero input on my TSH levels as a correlation. I have tracked it closely. T4 is absolutely correlated. As my T4 rises TSH decreases and vice versa. This has been plotted for the last 4 years by myself. Everyone is different though so good luck to you .. Hope you figure it out.

tattybogle profile image
tattybogle in reply to KevJenn

KevJenn, Hi, i just noticed you have graves and are taking antithyroid meds to keep your thyroid hormones controlled...this is a very different situation from someone who has had their thyroid removed and is taking oral T4 and T3 to replace thyroid hormones. Once we take replacement thyroid hormones the TSH relationship to fT4 and fT3 shifts, probably due to T4 monotherapy instead of having variable production of T4 and T3 from the thyroid gland. So a very low TSH on thyroid replacement hormone no longer indicates the same thing as very low TSH caused by overproduction of thyroid hormones.

When we say T3 has a big impact on TSH we are usually meaning 'oral T3 medication has a big impact on TSH' in someone who is effectively hypothyroid , (even though their original disease might have been graves)

Perhaps this difference explains why your observations on T3 not affecting TSH are rather different, and why you thought meanbeannyc 's TSH is too low ,when for people being treated with thyroid hormone it is not a problem to have TSH at that level and many need it lower.

My doctor prescribed me Synthroid about 2 years ago. I didn't know much about hypothyroidism at the time. My symptoms lessened for several months but eventually returned. I informed my famiy doctor about my symptoms and had a blood test ordered. He informed me that my TSH was in the normal range. But my symptoms continued to get stay the same instead of better. I continued to informed my family doctor about my symptoms and he kept ordering blood tests. l started feel discouraged because he kept informing me that my TSH levels were normal. I had started to see a naturopathic doctor at a health clinic and she informed me of an alternative that may help me if l was interested. I never heard about natural dedicated thyroid before. I started to research about it online and l found a resource called Stop The Thyroid Madness. The author, Janie A. Bowthorpe, had much information aboit hypothyroidism so l bought her book by the same title. I've learned so much how to take better care of myself. Finally, l ask my naturopathic doctor to prescribe me the NDT. My symptoms lessened significantly. I was surprised. I've learned so much about NDT since then. l still have my days where my symptoms return but not at the same intensity. I feel encouraged that l'm receiving proper medical care from my naturopathic doctor. I hope l was helpful.

Meanbeannyc profile image
Meanbeannyc in reply to Ojibw

If I can’t function on 112/5, why would I be able to function on lower T4 ? I’d have to take 3+ grains to get to 112 T4 in NDT and then I’d be on 25mcg T3 on top of it. That’ll give me a heart attack

I also have trouble with natural desiccated thyroid as it's too high in T3 compared to t4 for me too. I love the idea of it and wish it worked for me but it doesn't.You might find you need to work on your nutrients to help create T3 from the T4 you take xx

Meanbeannyc profile image
Meanbeannyc in reply to Ojibw

I also think STTM is a bunch of BS!

Batty1 profile image
Batty1 in reply to Meanbeannyc

I was on Armour and did well until my GP added Cymbalta to my daily medication to help with chronic pain (24/7- 365 days a year) relentless pain from (PSA) only to discover that Cymbalta reacts severely with Armour even though I never took them together always 4 hours apart... I wonder if vitamins and other things also react with Armour in certain people.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

What interactions did u have with cymbalta and ndt?

Batty1 profile image
Batty1 in reply to Meanbeannyc

Severe hand shaking that was so bad I couldn’t even hold a cup of coffee without losing 1/2 of it and my thyroid test showed my all my numbers dropped to almost undetectable.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

What numbers dropped to undetectable? What do you take now?

Batty1 profile image
Batty1 in reply to Meanbeannyc

TSH, FT4, T4 and T3 .... My Endo doesn’t test FT3 and I currently take 100mcg Levo and 10mcg Cytomel

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

How do u feel on that

Batty1 profile image
Batty1 in reply to Meanbeannyc

I feel fine on this dose but definitely not fantastic but I function.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

Functioning.. is good...

Batty1 profile image
Batty1 in reply to Meanbeannyc

I think that depends on my day in regards to functioning.. lol

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

I’m with you. Life is not good when you’re athyerotic.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

I know a bloke who has zero thyroid function. TSH 300, FT4/FT3 non existent. Says he’s been on Synthroid, Synthroid/cytomel, cytomel only and NDT. But no matter what, life is just unlivable.

Batty1 profile image
Batty1 in reply to Meanbeannyc

Wow TSH of 300 is crazy !

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

He says he’d rather live like that then attempt to take any of these meds

Batty1 profile image
Batty1 in reply to Meanbeannyc

Its up to him but I wonder what all of his other thyroid test revealed, if TSH is 300?

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

FT3/FT4 is zero.

Batty1 profile image
Batty1 in reply to Meanbeannyc

Wow, how does he feel and look with such bad thyroid levels? Just curious.

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

He looks fine. He feels awful, but feels awful on NDT, T4, T4+T3, and T3 only. So he takes nothing.

Batty1 profile image
Batty1 in reply to Meanbeannyc

Still scary to have such high TSH .

Meanbeannyc profile image
Meanbeannyc in reply to Batty1

He’d rather take nothing than deal with the side effects of Synthroid and/or cytomel.

Just My 2 cents ,

But was on a search myself. All things were mostly normal. Except my thyroid Tsh Was a little high they said I had hoshimotos. I had weird symptoms cortisol spikes , gut and other issues all of a sudden. After a yr and 50k , 10 doc , meds, vitamins etc... I kept peeling back the onion , Just recently was told I more than likely have Cirs, Chronic Inflammation Response syndrome , Which is common with thyroid issues . Waiting for final test results , But mold toxicity, seems to be the culprit. I never considered it. Although lyme or other myotoxins or biotoxins can bring it on. If you have a gene that 25 percent of us have , (Genie test) that will exasperate it. Once turned on it usually doesn't turn off without help.

Most Doctors , all ten I went to dont even consider it or testing or understand it. Need a specialist in the field.

A 15 dollar VCS visual contrast test on survingmold.com would rule it out if you pass . But if you fail the test is 98 percent certain CIRS. Which is an autoimmune problem. Thyroid gets attacked first. This is for everyone on this sight. If you have prescription glasses ware them, its not testing your sight ,but the contrast part of the brain.

CIRS creates havick on all systems in the body, And I mean all . And it wont get better til addressed. Thats why regular docs cant figure it. MAYO AND CLEVELAND DIDNT FIGURE IT......Go figure,,, Did 100 tests of all sorts , not one did tests for CIRS. Took me a year to figure it to this point.

If You fail a VCS Test you probably have CIRS , get with a doctor who knows , Usually wellness doctors not covered by insurance unfortunately. The test is done on your computer in about 10 minutes

Hi I hope you begin to feel better soon.I'm sorry I cannot help you with the readings of blood I struggle myself, however I do know a good protien diet can help with plenty veg.

Just take care if you are gf.

Hey, I would really look into Paul Robinson "recovering with T3". I remember him writing that many people who need a T3-only therapy react to T4 with extreme heart palpitation and I had this myself. I was feeling like I had a heart attack, only that I was 16 at this time and there was now way I was having a heart problem. With splitting T3 (3x20 mcg) I never have this problem. But I still get a very rapid and strong heart beat whenever I eat something I can't tolerate or anything that contains histamine or any kinds of supplements. It also makes me very depressed and moody. Something must have triggered your Graves and as it is autoimmune it has a lot to do with the gut where about 80% of your immune system is. I would really give AIP Paleo a go. Dr Amy Myers (The Autoimmune Solution) had an autoimmune thyroid disorder herself and this diet saved her. Have had all your minerals and vitamin levels checked?

TRAB and TSI are non existent 2 years post thyroidectomy. So the immune response has lessened. Idk what my diet has to do with that.

Wow such a long string and lots of info - my path is different- hypothyroidism (Hashimoto’s) but I would say the going gluten-free free has helped tremendously with my overall feeling of health. Has to be strictly gluten-free. As someone on here told me, you can’t be a little bit pregnant, nor can you be a little bit gluten-free. I too am addressing vitamin deficiencies and will be reading round the b12 potassium interactions. Achy hips and breathlessness- hmm might explain something for me 🤔

As others have said attend to all aspects not just thyroid hormones- there is a synergy within all the contributing factors.

Read other’s stories as much as you can to get a feel for what resonates with your situation- it’s really helped me and I’m sure it will help you. Oh and big blooming virtual hug from the UK 🤗

Whilst your lab results dont look too bad, have you considered that you still have an auto immune disease? Taking out the thyroid, in theory, relieves symptoms, it doesn't remove he Graves disease. Maybe you need to check inflammation and vitamin levels? X

Meanbeannyc profile image
Meanbeannyc in reply to galathea

Idk my symptoms are worse than ever

galathea profile image
galathea in reply to Meanbeannyc

Well have you only focussed on the thyroid hormone results and ignored everything else?... no guarantees, but worth looking at all angles....

Meanbeannyc profile image
Meanbeannyc in reply to galathea

TRAB and TSI both have reduced. Therefore Graves is no longer present. The only other thing wrong with me is Vit D

galathea profile image
galathea in reply to Meanbeannyc

So the symptoms of low vitamin d... bone pain, fatigue, weakness, depression. I havent read all of this thread, but have you any of these symptons? Are you taking vitamin d?

Meanbeannyc profile image
Meanbeannyc in reply to galathea

I have more symptoms than that. I can’t breathe sometimes. Heavy eyes, swollen, internal body temp of 95F, periorbital edema, carpal tunnel, muscle cramping and twitching, swollen eyes, blurry vision comes and goes.

Yes I take vit d

I cannot give you specific advice, but am sure the site administrators will be able to guide you in the right direction. I just want to say that you should never give up hope. Find out as much as you can about your thyroid disease so that you can feel more in control of your own health. Sometimes a change of diet can radically improve the condition. Keep positive and keep strong.Lesley

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