Hi all , I need some advice. I've been on thyroxine since 2014 after thyroid removal from having graves. Through the years horrific symptoms and changing doses. Worst symptoms being ectopic heartbeats and dizziness. As of late cant stand too long low bp .Well I had gallbladder surgery and the dizziness isn't going away. I had a blood test and my urea is low 1st time ever in my life and my tsh has jumped to 5. Dr has recommended r3 but said it may cause palpitations and that scares me as they stop me from living. I do.t know what to do. Should I just increase dose my t4 is low 12 . Anyone's experience on t3 ?
T3? I'm scared feel so unwell : Hi all , I need... - Thyroid UK
T3? I'm scared feel so unwell
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anetap4545
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If you add your latest results and ranges we'll be better able to advise 🤗
My tsh is 4.43 ranges 0.40 to 4 and t4 12.7
How much T4 are you taking? Certainly looks like you need an increase but you need to take it slow and steady to allow your body to adjust... what is the range for fT4? Do you have any fT3 results?
p.s. you need to press reply or I won't be notified
I'm currently taking 100mg amd endocrinologist has recommended I try 125mg for a.month and mentioned to try t3 but I'm scared so he said to try this 1st. No t3 amd t4 range 9-25
You certainly want to get your fT4 levels up nearer the top of range then test and see how well you are converting to fT3 before considering adding T3
Ok great this is what I wanted to hear. So takes the 125mg for a month and see if tsh comes down? Last month was3.1. How in a month such a big jump?
It's a sign that you are under replaced, generally you raise your dose wait for 6-8 weeks to let it settle retest and adjust... chances are you will need another increase after this one but as you get nearer the top of range increase in smaller increments to find your sweet spot.
I'm not surprised your heart is unhappy with such low levels
It been worse in the past just scared it will get there again. Terrifies me. How to get it to stop amd no test every 3 months? Endo said to trst in 4 weeks. Just scared the increase will make me feel.worse
Your heart needs a good level of thyroid hormones to work well, I think you will likely feel a whole lot better as your levels rise.... if testing at 4 weeks is what they want to do you won't necessarily have had chance to adjust to the new dose but it will give you a guide... but suggest 2 months before adjusting dose again
As the others have said have they checked your vit/min and importantly iron levels as low iron gives palpitations?
Palps have settled for the time being more tired, sching knees, extreme dizziness. My orons always low as I have thalassaemia, b12 getting spray tomorrow as it's 230 amd they said was ok but don't think so .
thalassaemia had to look that up! Suggests that blood transfusions can lead to excess iron? Perhaps you need to approach your care provider for this as it isn't being managed well enough? Assuming the B12 range is 180-1000 then you want to be aiming at over 500 at least
I have the thalassaemia covered. But b12 is 250 and dr said was ok! I feel like death so Tommorow ill buy a spray
Dr is an edjit! They only have to react when you go out of range but even then they don't understand how important these things are 😠 I find the sublinguals are good and with less additives than the spray. Are you on iron supplements?
They make me feel awful so I eat liver. Best thing that works. Sublingual?
Sublingual B12 (Nature Provides).... heme iron is much more effective for raising your levels and easy on the stomach
Terrible website but great product!! threearrowsnutra.com/en-uk/...
A spray? Liverrs way to go 100%
Bottle with a dropper.... unlikely to get enough iron from liver alone if really low and limit to how much you can eat due to high Vit A
It's fine trust me 300g a week
The trouble with being hypo is that we don't absorb well due to low stomach acid so you can be seemingly doing all the right things food wise but still not getting enough out of it to sort out the deficiency.
So you eat 300g of liver a week and still have low iron?
In not as good as I should be with it
In my opinion at this stage (presumably approaching a likely/more useful dose) a raise of 25 mcg in one jump might be too much - especially if this is only for a month!? I would advise half that amount. If you are very sensitive, even a quarter. T3 might well be necessary at some stage but take small steps towards all that right now. No hurry, no matter how pressurised you are (by yourself or your endo).
If I'm on 100 now you think an extra 25 is too much? He said a month to see if it changes.. then maybe go bk to 100mg again. T3 I've never taken scared of side effects eg heart. I just want this dizziness to stop amd low bp
This endo is surprisingly open to T3. However he is unsurprisingly cavalier about dosage. One month is not enough time to know what your body will do with the extra 25mcg of levo. At least six weeks between testing on a new dose is recommended on the forum, symptoms or not! I do have a heart condition (in my view entirely due to hypothyroidism) and I find I am very sensitive to dose changes. If you are very afraid, you might consider that you too are indeed sensitive and respect your own self on this. Throwing bigger doses of thyroid hormone (levo or T3) is not a sensible way to go about it, in my view. I made just this mistake over a year ago. Our sensitivities should be taken into account. You might need all of that 25mcg increase but you can do it more gradually. Good luck.
So half if a 25.mg tablet? Ps what condition? It's my biggest fear.. love to know more as I just had heart testing done
I am unsure of my official diagnosis as the medics don’t have a clue. It’s nothing ‘obvious’ to them so…… Originally they called it coronary spasm. Now it’s called two different things microvascular angina or vasospastic angina (hardly any difference in symptoms really - splitting hairs). I can’t go into the journey I have been on right here. I should put it in my bio but I just keep hoping I reach a good point before I do that. I have suffered it 20 years plus, due to complete ignorance of medics. I can see now looking at my records all those years ago I was subclinical but no notice was taken. Allegedly it’s rare but I have read about it on some cardiologists promos info and it’s also on the British Heart Foundation web page. I just want you to be aware that if you are already having heart issues that you are careful to not unnecessarily give yourself symptoms temporarily. Tiny amounts of levo are very noticeable to me but not necessarily ‘bad’. It’s often an improvement, if I don’t take too much all at once. Gradually titrate. I have found doctors want you to jump in with both feet as they have no respect for thyroid hormones or hypothyroids for that matter.
So half a 25mg tablet?
If you are really scared you can take a quarter. It’s easier to build on that (in my opinion). It’s much harder to go back and undo things, if you have overdone it. Easier to take it easy! Stick with the quarter (or half) and see how you feel, ideally six weeks minimum to go give it time to work. If you feel ok by the six weeks you can add the other quarter and repeat. I have discussed this approach with my GP, she was clearly taken aback but agreed it was a reasonable way forward. It’s just a pity they don’t dole out this advice themselves. Well of course they dont because they don’t have a clue! I found and I have read on here that the nearer you get to a proper dose the easier it is to overdo it. So assume you are near your perfect dose and respect that small increase. There’s plenty of time to increase your dose - under control.
Thyroid hormone doses are almost always in micrograms (mcg) - not milligrams (mg).
Hi again, so you recommend I do a certain way of eating?
It's tricky to advise as you can eat the very best of everything but actually absorb very little of it because of the low stomach acid caused by low thyroid hormones...
Most of us have had to supplement quite heavily at least in the beginning whilst getting our thyroid dosing to a good place
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
If you endo wants to try and replicate the above - it might be worth considering adding in some T3 to help restore T3/ T4 thyroid hormone balance.
No thyroid hormone works well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal -
Stress and anxiety are common triggers when with Graves Disease and we now have some research that you may like to print off for yourself and medical team ;
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
This confused me. Don't know what the 1st half means . I'm not graves anymore, had it removed 8 years ago amd since then supplement with thyroxine. My vit d, b12 are ok but will do more b12
Graves is a multi organ Auto Immune Disease, an immune system malfunction, for which there is no cure and generally only gets diagnosed when your immune system attacks your thyroid.
The thyroid is a major gland and likened to being your body's engine and can drive up your T3 and T4 levels too high causing all sorts of health issues and it is seen as safer to take away the thyroid and make the patient hypothyroid so they can't become hyperthyroid ever again.
The first research papers recommends the better outcome for Graves seem to be that we stay on the AT medication for several years if allowed and obviously tolerated.
The second research paper suggests that RAI the worst treatment option some 10 years post RAI thyroid ablation.
This research paper however does not specify what the patients treatment options were post RAI ad there are currently 3 main treatment options :
T4 monotherapy :
T4 + a small dose of T3 - Liothyronine - making a T3/T4 combo which your endo has suggested for you to try :
T3 only - as some people can't tolerate T4 at all:
Natural Desiccated Thyroid ( NDT ) which contains all the same known hormones as the human thyroid gland, namely trace elements of T1.T2 and calcitonin + a measure of T3 and T4 in each tablet/grain.
NDT is derived from pig thyroids, dried and ground down into a powder and then made up into tablets / grains and the original treatment for hypothyroidism and successfully used for over 100 years prior to Big Pharma launching their T3 and T4 treatment options on the back of NDT.
I have no thyrood so no more graves. Been on thyroxine 9 years and have tolerated it but the big question how to keep it stable. It never is and I'm getting tested every 4.months
I'm sorry but you have to understand that your thyroid was not the cause of your illness BUT the victim in all this - as there is no cure for Graves - it is an Auto Immune disease and a malfunction of your immune system response and common triggers include stress and anxiety.
I know stress.did it to me. My sister beat me.for 20 years amd constant fight or flight and anxiety to rhis day . Just so hard. She made me sick. I know it
Ita been 6 years, how hard it is to get to optional range? Almost impossible..
As I understand things RAI is a slow burn and the dose not as considered as one might think - with some patients needing a second dose of RAI if the first dose does not have the desired effect.
And at the end of the day you will become fully hypothyroid with all that entails.
I see you have started your own question so I think it best I pick you up over there :
Hello Anetap - just seen I wrote to you in some detail 4 years ago :
I can't really add much to what I already written unless you care to share some blood test results and ranges.
It is essential tht you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH reading seen is isolation - though fully aware in primary care, this maybe all you get - with an occasional T4 - and why many forum members are forced into arranging their own, private blood tests.
Did you look up Elaine Moore - elaine-moore.com
Did you try reading the book I suggested ?
SlowDragonAdministrator
First step is to increase dose levothyroxine
Ft4 is far too low showing you are not on high enough dose
Which brand of levothyroxine are you currently taking
When were vitamin D, folate, ferritin and B12 levels last tested
What vitamin supplements are you taking
Any operation will lower B12
Bloods should be retested 8 weeks after increasing to 125mcg daily
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Assuming you in U.K.?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Jaydee1507Administrator
You have mentioned that your B12 is 230 which even without a range given looks very low and no wonder you are struggling.
Are you a vegan or vegetarian?
If not:
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
cytoplan.co.uk/vitamin-b12-...
amazon.co.uk/Better-You-Boo...
This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good you can stop the stand alone B12 and just continue with the B complex.
amazon.co.uk/Liposomal-Soft...
How are your other vitamins - ferritin, folate & D3?
Unless we have all vitamins at OPTIMAL levels its hard to tolerate T3 and our thyroid hormone will not work well.
Whyin scared to start t3. B2 was 180 amd above . U sore what to buy I'm in Australia
Are you vegan or vegetarian?
No I'm not
Then you need to push your Endo and or GP for tests for pernicious anaemia and B12 injections. There's a PA forum here on HealthUnlocked if you want to get advice there.
You should also get GP to test for coeliac.
I don't have that they would have told me by now but b12 spray I can get
If you have pernicious anaemia then likely sprays or tablets won't work.
Taking any B12 supplement will also prevent you getting diagnosed for PA as it takes 3 months for your levels to drop again once you have been supplementing.
You need to understand that B12 deficiency is under diagnosed as the reference ranges are too wide and cut off point too low. I'd strongly recommend you question your doctors and push for further tests.
I can't suggest a good supplement as you are in Australia. Suggest you post on the PA group here on HU.
I don't have pa
How do you know you dont? Have you been tested? Please don't rely on one doctors say so. Your B12 result looked low.
What was the reference range for that test?
180 and above
Then your result is bottom of the range. Too many people suffer with low B12 levels and aren't treated. Your choice.
In going to supplement 100%
Have a full thyroid test to include the following ( from a single blood draw) - after at least 6 weeks on 125mcg levo as your endo has suggested. Only then might you need to consider T3
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg
SlowDragon has listed the private tests available.....it's doubtful that an NHS medic will agree to this comprehensive testing
Without these results you cannot establish what is going on
Relying on TSH and FT4 will not provide the detail you need
Science shows that FT3 followed by FT4 are the most important labs!
thyroidpatients.ca/2021/07/...
You are hypothyroid ( TSH too high at 5) and I suspect your levo dose is too low.
Why has your endo suggested T3?
Does he suspect poor T4 to T3 conversion ( high FT4 with low FT3)
You could be correct and you just need more but without the full labs to establish this it is basically just a guess.....which helps nobody.
I'm currently taking 100mg amd endocrinologist has recommended I try 125mg for a.month and mentioned to try t3 but I'm scared so he said to try this 1st. No t3 amd t4 range 9-25
So it looks as if you take 100mcg levo and your FT4 is 12 (9 - 25)
In that case your FT4 is miserably low.
I suspect you will find your FT3 low and very likely your nutrient levels
For good health almost every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.
Low cellular T3 = poor health.
Also bear in mind that the heart needs a lot of T3....yours iscomplaining!!
So long as it's established that you need T3 and it is correctly dose there is no need to be scared of it. I need a high dose of T3-only to function and I'm in no danger, a heart scan has shown a healthy heart....and I'm aged 78.
We need what we need and we are all different....we are human beings, not machines that can be calibrated to a set point! Medics sometimes forget this!
I'd suggest you do increase to 125mcg but a month is not long enough for the increase to settle in your system.....that takes 6 to 8 weeks.
After at least six weeks on a steady dose of 125mcg have a full thyroid test,the results will show the way forward re thyroid hormone levels and will also clarify nutrient levels. These must be optimal to support thyroid function/ conversion.
You may or may not then need T3
Post the new results and we will advise.
Don't worry, just be patient it takes time to treat thyroid disease....but it can be successfully treated
Sorry....this is rather long winded, but hope it helps!
Good luck!
I have my follow up in 4 weeks and he's ordered a full panel.
Relying on TSH and FT4 will not provide the detail you need; I 9nly got this tested as i saw.my gp.as my dizziness wasn't going away he just said low bp as no one wants to relate it to thyroid.
Why has your endo suggested T3? I'm assuming from my increase in tsh so suddenly thinking poor conversion but was always in the 2 or 3 range prior to my operation. Had a blocked bile duct. Ever since then feel like trash.
I have no idea what do o, how do I keep the thyroid steady? How to increase t3 without t3 supplement. Do I cut out foods feel I've tried everything feel so overwhelmed sadly 😥
Take this one step at a time.....full testing first.
Many of us have felt overwhelmed by the whole sorry mess but there is a way out of it....been there, got the T-shirt!
It took me decades to find out why my health was slowly slipping away....I felt just like you do. Desperate.
Thankfully I found this forum, and with support began to learn about my condition and how to deal with it.
Medics had been clueless, the many treatments both NHS and private made scant difference. It was discovering that I need (high dose) T3 that saved me. My journey is recorded in my bio.....I had to do an enormous amount of reading ( not easy with severe brain fog) to find the answers I needed.
I have no idea what do,
Yes you do! The advice is in the replies in this post! Read them carefully.
I've had full testing so many times and I don't know how to get it at a level where my t3 and t4 are good, so hard!
Hello
I take 60 micro grams of T3 daily, ,I did experience palpitations-dizziness-getting so hot I thought I would pass out and pain in my eyes, I was bullied at work ,it was horrendous and I blame the severity of my symptoms on stress, I left work and my health improved from the day I made the decision to leave . Being scared as I was and you are will cause symtoms to increase, I hope you get better,
All the best
Frank
T3 help?
I am intolerant of levothyroxine, liothyronine means I can live a normalish life,I still get tired.
Your symptoms go away? So sorry you got bullied hope they get their karma
My eyes are still painful form time to time and I get tired but thats about it. Ive put the bullying behind me, I dont think about it , thay have no power over me anymore, I do hope you get better but it takes time, hang in there!
Some people are fearful of their own thyroid hormones when they have no thyroid or have hypothyroidism. One reason for this is probably because doctors will use fear mongering to keep their patients' doses as low as possible and will exaggerate the "dangers" of thyroid hormones. This link explains what the actual risks are :
healthunlocked.com/thyroidu...
.
Optimal levels of some nutrients
Iron and related measures :
rt3-adrenals.org/Iron_test_...
For ferritin (iron stores) we tend to use more precise levels than suggested in that link :
Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
Source : thyroidpharmacist.com/artic...
For information on patterns of results that would be seen with anaemia from various causes:
davidg170.sg-host.com/wp-co...
Be aware that people can have more than one problem with their iron. For example, someone with low iron would normally have small red blood cells (microcytosis). Someone with low B12 and/or folate would normally have large red blood cells (macrocytosis). What happens if the patient has low iron and low B12? The patient might have red blood cells of fairly normal size.
Personal anecdote : I had all sorts of problems with my heart rhythm when I was low in both iron and ferritin. I had bouts of tachycardia (fast heart rate) and also severe chest pain when my heart rate went up to 150 beats per minute. Fortunately, improving my iron and ferritin got rid of the chest pain completely. Unfortunately, having been triggered I have never managed to eliminate the tachycardia completely and I control it with beta blockers. It is a lot better than it used to be.
.
Vitamin B12
Signs and symptoms of B12 deficiency :
b12info.com/signs-and-sympt...
Suggested optimal levels :
perniciousanemia.org/b12/le...
In the above link see this section :
The New Normal Vitamin B12 Levels Chart
I try to keep my own levels of B12 around 1000 ng/L (result from a serum B12 test) or 100 pmol/L (result from an Active B12 test) and I don't worry if I go above those levels because B12 (unlike many nutrients) is not poisonous in excess.
And for info on different kinds of supplements for B12 - I always take methylcobalamin with the occasional addition of adenosylcobalamin :
perniciousanemia.org/b12/fo...
.
Folate
Signs and symptoms of a folate deficiency :
b12info.com/folate-b9-defic...
We usually suggest that optimal is in the upper half of the range, where the range has an upper limit. If there is no upper limit then a good level would be at least in double figures e.g. around 15 - 20 mcg/L.
I don't know why, but quite a few members have reported that they have problems maintaining their levels of folate where they want them.
A good supplement for folate is methylfolate. Avoid folic acid.
.
Vitamin D
SeasideSusie wrote a post on this :
healthunlocked.com/thyroidu...
Optimal for this is often suggested to be 100 - 150 nmol/L or 40 - 60 ng/ml.
nmol/L is mostly used in Europe, ng/mL is mostly used in the USA. I'm not sure about other parts of the world.
To convert from nmol/L to ng/mL or vice versa use this link :
grassrootshealth.net/?post_...
Note that getting the most out of vitamin D also requires good levels of magnesium and good levels of vitamin K2. There are many, many posts on the forum on the subject of magnesium and K2.
I'm over on your thyroid page and reading your back history -
I will get back to you on your own page when I've read more about your situation.
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