Can I ask those on here who are on T3 only... We're you on anything else before going on T3 only and does T3 actually help raise you T3 blood results..
If you were on anything else what was it and how did you get to be on T3 alone
My T3 has been very low since being on levo I'm very ill my T4 is also low but my TSH moved from suppress to high then back to low my gp has been fiddling with my levo dose since May last year when I had My total thiyroid removed .. I have a friend who has been through the levo game of tennis but she had radiation on her thyroid to kill it she had graves like me and this last 4 months she's been on T3 alone after feeling very ill on levo she now feels great and has managed to return to part time employment I'm wondering if T3 alone would help me I feel like I'm dying slowly 😩
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Two months ago your levels of B12 - Folate - Ferritin were very low in range. They need to be optimal for your Levo to work well in the body - especially for conversion. Adding T3 when they are low can cause issues - something we see a lot of on the Forum.
I don't know because my bloods have not been done I'm using the vitamin D +k2 oral spray but my gp says my levels are OK to be honest I can't afford to keep buying vitamin supplements I'm on universal credit and pip my prescriptions are free I suppose that's why my gp has said my levels are OK.. But I have colitis and since being on levo I have very loose bowels and server pain my bowls become swollen and tender this subsides when I come off levo I know because I took myself of it for over a week then of course had to go back on it and I'm back to square one I've never heard such noise coming from my bowls and my poo is like a ginger jelly so sick of feeling so unwell.. 😩
My thiyroid was removed because my gp just wouldn't listen to me kept saying it was the menupause 😠 up shot my thiyroid went toxic nearly killed me went in to thyroid storm... Had emergency op to remove it.. But been put on levo which I'm not getting on with I have a thing to synthetic meds my gastro consultant actually said this I have colitis and for some reason synthetic meds just don't agree with me.. My T3 has been very low on my last bloods(I have graves) my tsh has gone from suppressed due to the graves to high now its gone low and gp wants me to lower my dose Again I've been up and down on levo with no improvement on bloods or how I feel I've not gone down and are remaining on 75mg going up makes my colitis worse im having loose bowels and swelling and pain I know it's the levo I took myself off it for over a week silly I know but my bowel and stomach felt much better went back on as I had to and bang back to loose bowels swollen bowels and pain 😩😩
I am not medically qualified and have my thyroid gland but I do feel so sorry for you who is on levothyroxine alone. I have my thyroid gland and on levo was so unwell, more so than when I diagnosed myself when TSH was 100.
I tried several things, i.e. levothyroxine (caused severe palpitations - doesn't do this to everyone) then T4/T3 combination, which was an improvement then NDT but on T3 alone I recovered my health. Many members do so on NDT.
The problem with getting NDT or T3 prescribed is that for NDT false statements were made about this product by those who should know better (but don't). NDT was the only prescribed thyroid hormone replacement from 1892 and saved thousands of people. It is still used today but removed in the UK. It also contains all of the hormones a healthy gland would do.
Big pharma wanted a share of the profits and introduced levothyroxine (T4 alone). Many seem to do o.k. on this but on this forum are many who cannot and do not feel better.
Many researchers of thyroid hormones have proven that many cannot feel better on T4 only. A combination of T4/T3 did help and patient felt much better.
Yes been on same brand Eltroxin but now they can't get it with what's going on.. I spoke to my gp who agrees I'm not either converting or absorbing he thinks absorbing mainly because of my bowel problem but everything has been put on hold for now.. We did discuss going on liquid levo and as I could no longer obtain Eltroxin he prescribed me liquid levo but theirs no change I'm still in bad pain in the bowels and stomach my gut makes the most horrid noise and my poo looks like ginger jelly... 😩😩
Have you tried another brand instead. I think Morningside is the only liquid brand available here in the U.K. which I’ve only seen prescribed in hospitals. There’s a page on thyroiduk website that shows all the ingredients for Levo. You might not agree with one of those and also your vitamins and minerals may not be as good as they can be. Small things can make a big different with us thyroidies. As you’ve had a total TT, I’m not sure if you can be affected by Hashimotos. There’s a lot of things to take into account
I think your main problem is your GP. He just doesn't understand thyroid.
I spoke to my gp who agrees I'm not either converting or absorbing he thinks absorbing mainly because of my bowel problem but everything has been put on hold for now..
That was such a silly thing to say, because the cause of the problem will be evident from the blood test results. If you weren't absorbing it, your TSH would stay high and your FT4/3 low.
But, if you weren't converting, your TSH could be anywhere but your FT4 would be high and your FT3 low.
All he has to do is the right tests, and then have a good look at them, and stop dosing by the TSH.
I take T3 only, and have done for many years. I started out on T4 only, which made me pretty ill and caused a lot of weight-gain. So, I was put on T4+T3, which was a bit better, less symptoms, started to lose weight, but lost a lot of hair. So, I tried NDT. Hair started to grow but put on weight so fast you could practically see me expanding! So, after a lot of messing around, I finally ended up on T3 only - this was self-treating, you understand. My doctor at that time gave up on me when NDT didn't help. Since then, I've tried a couple of times to re-introduce T4, but it just doesn't suit me.
And, I have to add, none of that had anything to do with absorption or conversion. My labs told me I absorbed very well and converted perfectly. My nutrients were pretty good when I started NDT. But, I still couldn't tolerate T4. But, I went about all this experimenting in a more or less scientific way. Your doctor isn't doing that. He's dosing by the TSH, which is doomed to failure - especially as you've had a TT. Dosing by the TSH sends levels sky-high, then rock bottom again, and will continue like that forever. You will never reach a steady, healthy level dosing by the TSH.
Marz asking if you'd been supplementing your nutrients, and you replied that you were taking vit D plus K2. But, to be honest, that's not really going to help much. Taking vit D is not going to have any effect on B12, folate or ferritin. Plus, when taking vit D, it is essential to take magnesium. I realise money is tight but you just are not going to get well without optimising your nutrients. And, low nutrients are just adding to your symptoms. Your doctor thinks your levels are OK, because they are somewhere within the range. He doesn't know anything about nutrients - very few of them do - so wouldn't understand that it's where in the range the results fall that is important. So, unless your results are actually under-range, you're not going to get any help from him, it's all down to you, I'm afraid.
You seem to know more than my gp.. 👍 My T3 and T4 were low on last blood test TSH was high.. Gp told me to go up to 75mg from 50gm so I did next bloods T3 T4 low TSH went down then he told me to go down to 50gm again!!! But I've not I've remained on 75mg yes the last blood was TSH only no T3 T4 so I don't know where I am now only going by symptoms.. Loosing hair by the hand full no energy what so ever put on loads of weight even tho I've got loose bowels my skin is like parchment paper I feel dreadfully everyday.. Cud be wrong but these symptoms sound like I'm hypo but gp says no... 😩😩😩
I've not been able to get food delivered no slots so my friend did me a small shop about 3 weeks ago I couldn't ask her to hunt for gluten free stuff but my diet consists of veg chicken.. salmon veg rice,, my gp asked me to add some meat to my diet so I got beef and pate.. I don't eat pasta. Or potatoes.. Or bread.. My colitis was controlled pretty well until I started on levo.. 😒😒
It would seem that many medical personnel who treat patients who have hypothyroidism, don't seem to have any clue at all on how to improve patients' health and removed symptoms.
The following link is from an expert on hormones and he can not take on any more patients. When you read the link you will realise why this is so. He treats patients and not blood test results only.
Was this reply to me? You didn't click on the blue 'Reply' button under my comments, so I was lucky to see it.
With all due modesty, I probably do know more than your GP. But, only because your GP hasn't spent the last 20 years reading up on it, and only did a few minutes on the thyroid in med school. Most people could know more than him. Also, I've had a lot of practical experience, which he hasn't. Although they refuse to admit that that counts.
As I said, he's dosing by the TSH, which is wrong, wrong, wrong. And, is guaranteed to keep the patient sick. I expect you are under-medicated. Pretty sure the thyroid makes more than 50 mcg T4 a day. For a start, it makes T3, which doctors refuse to accept is important. But, it's low T3 that causes symptoms. Not TSH. TSH itself doesn't make you feel anything whether it's high or low, so, yet another reason not to dose by the TSH. There are so many reasons why that is wrong.
Of course your GP says you're not hypo, but what does he know? He isn't inside your body. You are the expert on your body and your disease. But, if you can't educate your doctor, and you can't see one that knows more about it, then there are only two solutions: self-treat or stay ill. Brutal, but true.
Virtually impossible to get any NHS endocrinologist to agree to prescribe ONLY T3
Some NHS endocrinologists will consider prescribing small dose of T3 alongside levothyroxine.
Initial 3-6 month trial of T3 has to be done via NHS endocrinologist and hospital pharmacy provides T3 prescription. Assuming trial goes well, endocrinologist writes to GP to formally request GP takeover ongoing care (and cost) of prescribing T3. Endocrinologist may need to do an Individual Funding request.
First step is to get levothyroxine dose high enough to get Ft4 near top of range ...Regardless of TSH
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3....there are a few NHS ones.
You have my sympathies if you've had your thyroid gland removed altogether but only get prescribed (T4) levothyroxine.
In theory, levothyroxine is supposed to convert to T3. Levo (T4) being an inactive hormone and supposed to convert to T3 (Active hormone needed in our millions of T3 receptor cells).
Quite a number of scientists have proven that many patients need a combination of T4/T3. The problem in the UK is that due to an exorbitant rise for T3 that they removed it instantly and without warning,from being prescribed and also caused panic amongst those who were well upon it.
It's fine for GP to 'fiddle' with dose, but if it doesn't improve the patient's clinical symptoms they should stop doing so.
If your T3 is low,then they should prescribe a T4/T3 combination but you may have to be referred to an Endocrinologist who may do so. Some are still not prescribing T3.
The main reason is that it used to be at a 'normal' price then the suppliers got greedy and it went up in cost to about £200 +per pack. Whereas in some countries it's about £2.
Many on the forum have sourced their own T3 but no information is permitted on the open forum, so you'd have to request a private message to be sent to you.
I, too, felt extremely bad on levothyroxine (there was no forum then) and every single day was a battle plus symptoms, plus heart going awry especially when asleep (scary). We have no idea when prescribed a thyroid hormone replacement what the reaction would be/should be i.e. I thought, once diagnosed and taking a tablet I would have an improvement - how wrong I was and husband had to put up with my heart rate going haywire in the middle of the night and which I did by wrapping ice-cold flannels about my neck.
Researchers/scientists have proven that a combination of T4/T3 can help many people but cost has come before restoring health, it seems to me.
Now, millions worldwide seem to be fine on levothyroxine but there are those - as on this forum - who do not - and suffer.
To make matters worse, thyroid hormone replacements have been removed, despite them proving to be ideal for many patients, but through False Statements being made about the very original one (called 'natural dessicated thyroid hormones (NDT) by the Association in order to enable it to be removed stunned many who were well upon it.
So instead of having options prescribed if levo doesn't improve our health, we now don't.
My gp who is a new one got things moving when he saw my blood results were the other my regular gp who is head of the practice just said I'm either not converting or absorbing?? As a member on here said yesterday he would know this by my blood work he obviously has no idear. The new gp actually brought him in to my consultation and said this lady needs to see an endo I recommend she has a trial of T3 has her T3 has not moved as you can imagine I was very pleased but was just waiting for my old gp to say no... But he actually agreed so my app was set up.. And then the virus struck and all app have been cancelled 😢 I'm struggling everyday just to live.. Yes I have heart palps one minute I'm up alert but shattered at the same time then I sleep for hours on and off then I'm up all night no matter how tired I feel.. Its like hell not to mention the levo and my stomach and bowel problems server headaches hair falling out skin so dry when I rub it flakes off even though I put baby oil on after every shower my nails are white with no pink in or half moon at the end only notice this when my mate who's a beauty therapist came to do them about 3 months ago she practices on me😊 she noticed them I really don't know what that means also I've gained so much weight I've always managed to maintain a steady weight through my diet its sole destroying I just feel my life is over 😭😭😭😭😭😭😵
Glad to read another doctor has stepped in and that you now have a referral to an endocrinologist.
Just a thought, considering the current situation, would there be an option of the doctor to seek telephone advice from the endo and be sanctioned to start a trial of T3 ?
A ' virtual endo appointment ' or maybe a 3 way telephone consultation -
It's just a piece of paper power and a CCG hoop that needs to be jumped through ?
To be honest my new gp knows my app with the endo has been cancelled and to be fair to him he started me on liquid levo I'm sad to say I'm still having the same bowel and stomach problems with it.. I received a text msg from my surgery saying my thiyroid bloods have been put back to another 5 weeks my last full blood count was over 14 weeks ago.. With one being done by the new gp but he only did TSH 😠 I'm finding it very hard to contact my surgery and we have received texts saying do not contact the surgery unless it's an emergency 🤷♀️ everything is just put on hold... I also have ME.. Fibro ostio arthritis, rhumertoid, and colitis ho and graves 😢 all my other medicines are gastro resistant because lm not good on synthetic meds this was diagnosed by my gastro consultant at the hospital in 2016..I know its silly and I'm not very well in bed most days but I keep thinking about the other poor people who have this virus.. Can I hold out for another 3 weeks probably yes but will need this to be sorted ASAP after lock down its took 3 years to get me diagnosed that was to late to save my thiyroid has it went toxic 3 years of hell and still going through it.. 😭
Yes, I know of your situation, but just thought it might be worth posing the question.
The reality is we don't know where we will all be in 3 months time, and from the doctor's standpoint, he's covered himself, you're been referred ( at long last ) and now in a holding pattern like very many other patients.
However, unlike very many other referrals, endos generally work from blood tests, and these appointments could easily executed over a phone call.
Up until a few years ago doctors prescribed T3 anyway as there was no need to refer patients for this thyroid hormone replacement. If you were identified as a patient not converting T4, T3 would be prescribed as another option to try, alongside the Levothyroxine in primary care.
The rules changed when T3 became so much more expensive to prescribe on the NHS. compared to Levothyroxine.
It has absolutely nothing to do with one's own doctor's ability to know anything, everything or nothing about dose and medication of same.
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