Thyroid UK
84,382 members99,374 posts

Levothyroxine

Hi everyone I haven't posted for a while. I finally got to see an Endo about my thyroid issues after many years of being medicated by GP. I asked about possibility of trying an alternative to Levothyroxine to see if I might feel a bit better. He was nice guy but immediately mentioned that it is not always good to believe what you read on Forums although I did not say I had been doing so. He then said that natural thyroid extracts are not recommended by the British Thyroid or American Thyroid Associations because of lack of evidence to support the claim that they are superior to Levothyroxine. Is anyone able to confirm whether this is an accurate statement please ?

58 Replies
oldestnewest

It really annoys me the way we are treated by GP's and most Endocranologist considering that I asked my GP years ago to send me to one and ended up waiting in the local hospitals Diabetes clinc . Yes I did see the endo but it was a total waste of time as he was so clearly not interested in patients that were anything other than diabetic !! I'm now going to try NDT that I purchased from America as I've been on Levo for 18 years and slowly got fatter and fatter regardless of diet & exercise

6 likes
Reply

Omg do we have the same endo you don't live in Cornwall do you. Had a 1.p.m. appointment. Finally 4 hours later she had the nerve to say she was running out of time I was with her 10 mins. But if I was diabetic she would have been more interested. Got her to test my adrenal and they were on the floor. Waste of my time.

1 like
Reply

No I live in Ayrshire ! But to be honest I think this problem is huge

The only people I've spoken to that have had better luck, have been recommended an Endo that's sympathetic, which unfortunately is like finding gold dust!!

1 like
Reply

I have also been on Levo for 19 years. Let me know how you get on with NDT. For myself I am worried about using it without medical support and monitoring. I wonder how others get round this? I am not confident to do it on my own

1 like
Reply

we just do it tess, and watch out for ourselves taking note of any untoward symptoms keep a diary and start low

6 likes
Reply

I was concerned as well, but my Doctors are supportive and will continue to monitor me and do blood tests etc. Have you mentioned it to the GP? I had to get a private doctor though to prescribe it which took time ringing them up and asking if they would, not all will. Not sure if that is because many private GP's also work for the NHS so maybe are unable to do it because of that. Whatever the reason it can be difficult easier if you live in the south London etc. appear to have more private GP's who will prescribe it. I have started on ERFA today.

1 like
Reply

To be honest I'm a bit scared, but I'm fed up feeling tired and overweight not to mention raised cholesterol. My doctor isn't interested in sick hearing TSH normal 😡 I have got a lot of info on here from people who have decided to switch and self medicate NDT my attitude now is nothing ventured nothing gained

Reply

In thinking of switching to ndt. I'm ordering some tomorrow. Let's do this together I am scared to but I'm more scared that life is passing me and in missing it. You only have one life there is nothing to loose kids growing up without me. I say this but I'm scared to.

what dose of levo are you on.

I'm on 175Mgs

What I am going to do though is try and take it through out the day. As I have adrenal problems I can not stress them out anymore. So I thought I would try 3 times a day. This is the only method I haven't done yet. I always taken everything in one go. As Dr Lowe says it's to reach all the cell. But maybe this is were I am going wrong. I know it takes longer to feel well. But my body is already broken and it might help stopping all the autoimmune problems I have.

Let's do it together.

then get blue horizon to test and then admin get help us with results.

lol kate

Reply

I know how you feel. My cholesterol is 330😭, which is alarming, and goes part and parcel with hypothyroidism. I was given Lipitor, which caused horrible side effects, including neuropathy. Then came zetia, which was worse.

Reply

Hi Tessica - do you have any recent results with ranges that you could share with us so people can see how things are for you. I am suspecting you are very low in T3 as I see on your Profile you have been diagnosed with Fibro. What dose of Levo are you taking ? Maybe it it not converting into the Active hormone T3. So many things to consider and to correct. Do you take any other medications that could be interfering with the uptake of T4 ?

B12 - Ferritin - Folate - VitD - Iron - also need to be OPTIMAL and not bumping along the bottom of the range.

There is lots of research showing how T4/T3 treatment can be helpful .

verywell.com/t3-superior-t4...

nahypothyroidism.org/thyroi...

4 likes
Reply

I wantto have an appoint with you marz as you know I have said this before

4 likes
Reply

Hi Marz,

My last test was done in March and TSH was 3.96. The labs would not do other tests because they said this was in range. I am 59 yrs. I was taking 100 and 125 mcg alternate nights of Levo. My previous test was beginning Jan this year as follows:

Thyroid per oxidase antibodies 94 in/ ml

TSH 13.42 mu/L

Serum free T4 18.3 pmol/L

As a result of this my GP dropped my Levo from 125 mcg to above amounts as she said I was overmedicated.

Yes I have been diagnosed fibro and sjogrens

1 like
Reply

Hi Tessica - just picked up your reply by chance as I did not receive an alert. If you want someone to see your reply then click onto the Green Box marked Reply - then the person will receive it :-)

Why on earth did your GP reduce your dose - how did she/he know you were over medicated ?? Your TSH is far too HIGH and should be 1 or under. You are only over medicated if the FT3 is over range and I don't think that was tested - so .....

Any chance you could have your tests done privately through Thyroid UK ? Have you had the Ferritin - folate - VitD - B12 - Iron tested ??

2 likes
Reply

I AGREE.. if my tsh gets above 2 , i feel terrible, achey, tired, and the list goes on.......

2 likes
Reply

Why are 99% of the doctors falling for these high levels of TSH??!!!! I've been fighting with my doctor for over 2 years now to be helped and she did nothing! I finally had the TSH test done in the morning and my level was over 6.0, so she finall relented and I'm now on Levo (25 mcg). These doctors have got to have many, many patients complaining about fatigue, etc. and they do nothing proactive to help. Very, very frustrating!

1 like
Reply

.... make sure you are re-tested after 6 weeks of your very LOW starter dose so that it can be increased. 50mcg is the usual starting dose - unless you are old/frail and have a heart condition. Sometimes the very low dose can make you feel worse in the beginning - it did me !

Reply

Thanks, Marz..yes..I have an appointment for re-testing in 6 weeks. I AM old..hehe, but my doctor is also very, very, very conservative..it took me two years of fighting w/her to get her to put me on levo...I'm changing to a new doctor as we speak! (I hope this doesn't make me feel worse...if so, I'll end up on the floor unable to move at all. Terrible fatigue already! Can't even walk my poor dog around the block anymore...

1 like
Reply

I wonder what your FT4 and FT3 levels are ? Could you have tests done privately through Thyroid UK ? If you cannot walk your dog around the block then I am thinking you must have very low level of T3.

OR - how are are your levels of Iron - B12 - Ferritin - Folate - VitD ? All are important in the metabolism of the thyroid and when low produce similar symptoms to being Hypo :-(

Reply

I can't afford to have private testing done and my doctor refuses to do anything other that the TSH level. Maybe this new doctor will be more open minded. I go see him on the 13th, so we'll see. My B12 was low and I am now on B12 shots for that. Vitamin D is fine now, but it was low a couple years ago. Ferritin, folate..I'll ask about those tests, too, when I see the new doctor. Thanks!

Reply

Good levels of Ferritin are involved in the conversion of T4 into T3. It is stored iron in the liver - so when low there is nothing there when your body asks for more - like walking the dog :-) Folate or B9 works with the B12 in the body - so good levels needed. Should be halfway in the range. Not sure your Doc will be aware of such fine tuning. Keep an eye on the VitD. As you have been low in so many things I am thinking Hashimotos - so have those anti-bodies tested too :-)

1 like
Reply

I'm hoping that this new doctor is more progressive and enlightened? All I can do is ask for these tests and hope he'll go along! Thanks!

Reply

....I wish you well ....

Reply

Thanks, Marz..don't know what I'd do without you guys!

Reply

If your Doc proves not to be enlightened then return here and ask more questions :-)

2 likes
Reply

You didn't do too bad there. It took 5 years for my GP to even think about trying me on levo. I am fibro, sero-negative rheumatoid and have the usual accompaniments of gut problems and Gluten intolerance possibly coeliac, as its in my family.

1 like
Reply

It's disgusting and frustrating that these doctors will NOT listen to their patients! What's the big deal in even doing a trial levo for say 3 months?? It's not like it's going to hurt anything!!

Reply

It is. I had to write a list of my symptoms and present it to my GP. He kept finding other things to explain them. I said if I have all these things wrong how come you arent treating me for any of them. In the end he prescribed 25mcg of levo. I was on that dose for a month and it made a difference. Then he upped it three times over four months, but he clearly wasnt comfortable doing it even though it helped me.

1 like
Reply

Why are these doctors so reluctant to prescribe levo? I just don't get it. I'm glad you were able to convince yours to do so...it took me over 2 years...and looking back, I think I've had hypothyroidism for years and years. I've been diagnosed with osteoporosis, too...and was osteopenia for many years before that. Could've been caused by the hypo.

1 like
Reply

I have FMS, and sero-negative rhurmatoid, plus osteo. Yes Ive been hypo for years, but it was all ascribed to me going through the change, then to my FMS. They are blind to what is right in front of their eyes. Plus working by TSH instead of symptoms doesnt improve matters. The crazy thing is id we were optimally treated it would eventuallybe cheaper.

1 like
Reply

I hsd early cataracts too. The optician was surprised.

Reply

Sorry Marz forgot to add that I am not taking other Meds

Reply

lack of evidence to support ndt? of course there is lack of evidence on ndt because they wont listen to reports of the benefits of ndt, ....... they dismiss before they want to hear the truth, a bit like politicians----so that is all a load of 'mens bits' if you get my crass terminology- NDT was used donkeys years ago before synthetic came out as that was all they had- unless you were locked up for being an odd bod needing thyroid. it is a money making thing for drug companies and BTF are totally and utterly biased on natural stuff because they are I

would think controlled by big pharma who controls everything. there is a certain professor in btf who no one likes and disbelieves everything an d anything that is wrong with a womans hormones, his wife needs a medal or maybe she functions with out hormones cos as far as he is concerned there are no such things as

hormones, perhaps that is why he isn't human- boom boom ! ndt is fine I use it. a lot of people use it where levo just doesn't do it alone. I am not well but I have other issues but I am worse on levo. and forums are th eonly way unwell folk find out anything truthful, and on www.netdoctor. I cant remember the whole web address that is run by doctors for people, who say that internet is now a place for patients to look up their symptoms so there we are. and I may add , that synthetic has its problems in stability as well.

8 likes
Reply

Well said again.x You should be in the house of commons giving them what for. I was thinking the same about lack of proof because of lack of testing etc.

x

5 likes
Reply

cheers mango- believe me it hasn't been for the want of trying- I have photocopied all my bald headed pics and swollen face and eye bags swelling on coloured a3 paper can you image what that looks like, I sent it to Andrew lanslgey when he was in hunts chair and david

ScamORON at no 10 and captioned it as MY lovely pics for your walls, your wife too could look like this if she gets endocrine problems and is not treated properly!'--- and then followed with a page long letter of what where an dhow it Is for us. I wrote to my MP about thyroid

adrenals and LYME and got a stupid waffling letter back from hunt, ther e is a government cover up with Lyme if no one knew, Plum island usa and biowarfare in UK. GOOGLE IT ALL. I would campaign outside no 10 if I was well enough I would start such a rumpus, activist at heart! cant stand injustice..

12 likes
Reply

You are so funny I love the ScamORON. I would definitely have you fighting my corner any day. x

5 likes
Reply

thankyou.. got more names unprintable..

4 likes
Reply

bluepetals2

Havent we all x

1 like
Reply

yes mrs raven I thinkwe should have just one off topic and admin allowed rant thread.

2 likes
Reply

Very true, maybe the forums are now worrying the medical people? Because we are talking about it and sharing our experiences, people power that's what we need people power keep talking and sharing experiences and maybe eventually they will have to listen to the people who actual have the problems.

9 likes
Reply

Hi

You need to buy the book "Stop The Thyroid Madness" to answer all your questions about natural dedicated thyroid.

Heather

2 likes
Reply

Also Your Thyroid and how to keep it healthy, both good books on this.

1 like
Reply

ncbi.nlm.nih.gov/pubmed/119... An endocrinal study publish on pub-med indicating that normalised levels of T4 may not result in an appropriately normal serum free T3 concentration

nahypothyroidism.org/thyroi... Thyroid Hormone Transport - (Marz also pasted this one from the National Academy of Hypothyroidism explaining how thyroid assessment can be misinterpreted and why physicians get it wrong)

The following also have links to other reports arguing the subject or proving it wrong

holtorfmed.com/five-ways-ne... Five Ways the New ATA Hypothyroidism Guidelines are Bad for Thyroid Patients

holtorfmed.com/best-clinica... A Look at Clinical Guidelines Bias and The Impact on Thyroid Patients

I don't know if you can get more information from this critical analysis of the situation by Dr Myhill drmyhill.co.uk/wiki/Thyroid...

2 likes
Reply

Hi there,

I do sympathise with you. NDTs have been in use for well over a 100years and were the only treatment used prior to the 1970s when levothyroxine was created. NDTs have to meet strict guidelines like any other meds. There has grown a culture of denigration of NDTs by endocrine bodies with no real research to substantiate their claims. For most of us who have tried adnauseam to make levothyroxine work but ended up switching to a NDT to achieve successful treatment this attitude without real sciencetific substantial evidence is at best insulting. To me it seems madness and difficult to comprehend.

So without realising you have hit on a political hot potato!!!! 😊

Levothyroxine does work but it does not work for everyone. For some people do need other thyroid hormones added in. Levothyroxine contains T4 which is a storage form of the active thyroid hormone called T3. Your body has to convert it into T3 when medicated by levothyroxine. If your body doesn't do this effectively then you feel ill on Levo. NDTs have all the thyroid hormones in:T1,2,3 &4. This is where they do differ. For some people this is what they need.

In your case a TSH of 3.4 on treatment if I understand you correctly is too high. You are under medicated. You need yout ft4 to be in the top third of the range which will result in you TSH being 1 or less. For some people the TSH will be suppressed this does not matter so long as you ft4 stays within the range. Many GP s no very little about the thyroid & treatment. Under medication is a very common occurance as a result.

As far as research is concerned there is growing evidence that a linear pathway between TSH and thyroid hormone production As the main way of regulating our body's homeostasis is incorrect.. More research is showing that there are multiple pathways to maintaining are homeostasis. Anyone part link breakage leads to down regulation or failure of the system. This is probably why people either remain ill on certain treatments or are not diagnosed via blood tests despite overt signs & symptoms of hypothyroidism. If you click on my posts you will see the research link.

Research over the efface of using TSH as a main prescribing treatment tool remains hotly debated in the medical fraternity. It is far from clear cut.

Apologise for the long post but hope it helps..

11 likes
Reply

Hi you need to visit the sites you have mentioned and read what they say also read anything by Dr Skinner, now passed on and Dr Kendrick. Ignore your GPs ridiculous comments on forums. We can't all be loopy-loo!

2 likes
Reply

No but it helps sometimes when dealing with loopy-loo medical professionals lol x

Reply

Oh dear that sounds very familiar here in the UK as well.

Reply

I have come across comments such as this, yet my Doctor's response when I told he I was looking into going onto NDT was 'good yes that's good'. The Doctor's in the UK don't seem able to advocate the use of NDT but a lot appear to be in favour of it and supportive when patients go onto it. How we open minds I don't know. NDT isn't new it's the original treatment for Hypothyroidism from what I have read and discovered in 1891, so been around a long time. From the research I have done it was used, I think, until 1970 when the drug companies made a synthetic version and because that was cheaper to produce that became the main treatment.

3 likes
Reply

I too asked my GP to refer me to Endo. He wrote to Endo providing my blood results and Endo wrote back to say they wouldn't see me as they thought i was suitably medicated on the Levothyroxine. So i didn't even get the chance to fight my corner.

Reply

What rot! The doctor obviously has a vested interest in prescribing levo. Its cheap thats all you can say for it.

1 like
Reply

You could ask the doc for evidence showing Levothyroxine is better than or as good as NDT. There isn't any of any of that, either ;)

5 likes
Reply

Yes I hadnt thought of that

Reply

Ring around your compounding chemists in your area and ask for Porcine, NDT or Armour. When you find one ask them which doctors are willing to prescribe it.

2 likes
Reply

Excellent idea. Thank you.

Reply

Yep, james, that's the way to go.

Reply

Exactly the same response I got a few years ago from an appt with Endo specialist. Felt so demoralised afterwards and as if I had wasted NHS time...

Reply

The endo is obfuscating. The only evidence an endo will accept is a formal double-blind study (which ain't gonna happen because there is no money in it). However there are tons of articles out there that say T3+T4 (or NDT) therapy works better for many patients. Checkout verywell.com and stopthethyroidmadness.com. For instance:

verywell.com/study-finds-pa...

Personally, were I in your position and could afford it, I'd just buy some T3 off the net and treat myself.

1 like
Reply

Prof Colin Dyan has done research that found no difference in outcomes whether on Levo or NDT. This is the only research I know of, so there isn't anything to prove it because no one is testing it. With prof Dyans work I always think you should start with a group of people who are not feeling well in Levo because plenty of people do, and of course what difference Wd they notice on NDT? nada. So your endo is right and wrong technically.

Reply

can somebody tell me what is the general objection to levothyroxine please i'm not sure it helps me 100% but tried natural thyroxine and it actually had a very bad effect on me. Is it that people find levo doesnt work?

Reply

You may also like...