Hi all, my name is Helen. I have just joined and have an underactive thyroid. I have been diagnosed for three years now. However, I still have all the same symptoms and am not sure where to go next. Does anyone buy their own T3 and if so do you take it with Levothyroxine and if so, how much do you take. Am thinking of taking some as my doctor keeps confirming that my levels are normal. However, although my levels are normal all my joints hurt, I am tired a lot of the time, I have a very low mood and burst into tears for absolutely no reason and I cannot seem to lose weight even though I dance, and swim three times a week and go for long walks. I am not a saint and I do eat chocolate, cake and bread but not in abundance. Anyone have any ideas? Would be good to hear from you.
Not getting any better: Hi all, my name is Helen... - Thyroid UK
Not getting any better
hsleap It's not possible to comment without seeing your test results, and chances are they may be 'in range' so classed as 'normal', but that doesn't mean they are optimal and at the right level for you to feel well.
Please post any results you have, and for a full picture we need to see
TSH
FT4
FT3
Thyroid Antibodies
Vit D
B12
Folate
Ferritin
If you don't have them then ask your surgery for a print out, you are legally entitled to them.
**
To know if you would benefit from the addition of T3, how much to dose with and whether Levo would need reducing, you need FT3 and FT4 tested at the same time.
Many thanks. I will arrange to see the doctor. I have never asked for a print out.😕
Hi Helen, welcome to the forum.
First and foremost, what are your levels? Do you have a print-out of your results? It could be that you are just under-medicated with levo - how much do you take?
Lots of us buy our own T3 - some take it with levo, some on its own. But, it is not something to be under-taken lightly. You have to look at it from all angles, first. And, you have to prepare the ground for it to work well for you. Have you had your vit D, vit B12, folate and ferritin tested? It could be that your remaining symptoms are due to nutritional deficiencies - which most hypos have. Nutrient levels need to be optimal for our bodies to be able to use the hormone we're giving it. 
Thank you. I have actually never asked what my levels are and have not been told. What should it be? I take 100 levo per day. I do take a vitamin d supplement but have never had these tested. I will make an appointment to see the doctor and ask him to confirm that my nutrient levels are good. 😕
Trouble is, he won't have the foggiest idea! Doctors don't do nutrition in med school, and for them, anything that is 'in range' is good - even if it's scrapping along the bottom of the range.
Far better to ask for a print-out of your results, and post them on here - with the ranges - for people who do know what they're talking about, to comment on.
hsleap You should have your Vit D level tested and dose accordingly. Excess Vit D gets stored and if you supplement when you have a high level already you can reach toxicity level.
You can get a home fingerprick blood spot test from City Assays for £28, results back in a couple of days
vitamindtest.org.uk/index.html
Recommended level is 100-150nmol/L.
Also, very important are the cofactors needed when taking D3
vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, and D3 should be taken four hours away from thyroid meds.
Magnesium comes in different forms, check here to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds.
naturalnews.com/046401_magn...
Check out the other cofactors too.
Try ndt . Thyroid s is easily sourced online
Explaining what NDT is might really help. Why it might be worth trying - or not.
JS33 and Hidden
Hsleap ndt has all the thyroid hormones and includes t4 and T3 . Many people still feel unwell even with normalised levels via t4 only. While many do add T3 to the t4 and do well , people like myself prefer to used ndt to give the more complete range of thyroid hormones that our own glands provide. Some people do have trouble converting the T4 to T3 and so may take T3 only ,or try ndt .
Sorry, what is ndt?
As no-one else is explaining...
NDT stands for Natural Desiccated Thyroid. It is dried pig thyroid, powdered, made into tablets. It was introduced about 120 years ago as the first decent treatment for hypothyroidism.
In the 1960s, synthetic thyroid hormones were introduce to the market. Now, anyone prescribing NDT is a rarity. Indeed, in France it is illegal. In the UK, it is unusual to get it prescribed at all. In the USA, some doctors seem quite content to prescribe but others dismiss it.
I prefer the simple term desiccated thyroid.
Desiccated thyroid is usually dosed in grains - with one grain being 60 to 65 milligrams. Each grain will contain about 38 micrograms of T4 and 9 micrograms of T3 (there are slight differences between makes). Nowadays, this hormone content is well-controlled in manufacture.
Some people do very well on desiccated thyroid but, as with everything, others do not!
Poor Helen didn't know what you or JS33 were talking about when you referred to NDT.
I am NOT saying she would, or would not benefit from desiccated thyroid, but she deserves to have the abbreviation explained. How many of us knew what that TLA [*] meant when we first got involved with thyroid?
* TLA = Three Letter Abbreviation
Thank you all. Once I have had an opportunity to get a doctor's appointment, which may take at least two weeks and once the blood test is back, which again may take another two weeks I will publish the results and all may become a little clearer. Thamk you all for your help 😊
I assume you mean this:
The Top 5 Myths About Natural Desiccated Thyroid
Have you been hearing this, that and the other thing about natural desiccated thyroid (NDT)? Well, today I want to talk to you about some of the biggest myths surrounding this form of treatment. Have you heard that you cannot take it if you have Hashimoto’s? Well, this article is for you! Please enjoy this article while I discuss these controversies, and much more, today.
Rest of blog here:
drchristianson.com/the-top-...
Unfortunately he puts his foot in it big-time with his next section - where he writes:
Desiccated – this means that something is chopped up really fine.
It flaming well doesn't! It means dried.
desiccate
verb
[WITH OBJECT]
1 usually as adjective desiccated Remove the moisture from (something), typically in order to preserve it.
‘desiccated coconut’
2 as adjective desiccated Lacking interest, passion, or energy.
‘a desiccated history of ideas’
Origin
Late 16th century: from Latin desiccat- ‘made thoroughly dry’, from the verb desiccare.
Pronunciation
desiccate/ˈdɛsɪkeɪt/
Just a word of caution for Helen. It's well worth trying to get some results using just Levo. One common problem is that we don't convert the Levo properly. Helen Levo is T4 and is a storage hormone. Our bodies convert that to T3 which is the active hormone that every cell in our body needs to function correctly. Sometimes this doesn't work well and so it is recommended that you test B12, folate, Vit D and ferritin as these help the Thyroid with the. Oncerstion but if these aren't optimal, not just in range , then conversion can be a problem so typical results to show that would be a high in the range FT4 and a low FT3. If the right supplements don't improve things then you may have to consider taking some T3 or instead taking NDT which has T3 in it.
But you can only see if your conversion is good or bad when taking Levo only. Once you add T3 to your medication you read the results differently and the only reliable result is the FT3 one.
Hence me saying it's very worthwhile to persevere on Levo until you know what your conversion is like. I had this problem after many years of being ok on Levo and found I had to increase the supplements I was already taking and add in B12 and Vit D. Vit D was around the 25 mark. After 6 months I was almost spot on but for other reasons I wanted to move back to NDT which I was initially prescribed in the 1980's.
Nothing works quickly in the Thyroid world I'm afraid! Patience is needed!!!
Many thanks Silverfox. I am beginning to understand it all. Bite size steps I feel.
Yes it can be very confusing at first and not helped by lack of knowledge by professionals. But anything you can't get your head round or just needing reassurance then shout out and I'm sure you will get help.
Good luck!
Endo told me blood normal for levo levels joint pain.nausea. feeling no energy ect has nothing to do with underactive thyroid once your levels show OK. Suggested don't need refreal all other prob seek your gp nothing more he can do that's how they treat us people as a nuisance
Absolutely but they can never tell you what is causing it!!
Not feeling any better, any ideas?
Not getting better
Things just keep getting better not :-(
Getting better on T3 / T4
When will I start feeling better?
