LDN: So after a few weeks of GPs and... - Thyroid UK

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Whitney2017 profile image
25 Replies

So after a few weeks of GPs and Endocrinologist not wanting to higher my levothyroxine (I'm on 75 and my TSH is 6.2). The NHS has no interest in focusing on my Antibodies (TPO was 1,300, now at 469 . Should be under 30). I constantly have tonsilitis, flu etc. I have made the decision to try LDN. I am waiting for my first delivery.

If allowed, I will update you all on my experiences commencing on LDN.

I am fed up of being a victim to my thyroid.

Whitney x

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Whitney2017 profile image
Whitney2017
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25 Replies
MrWellness94 profile image
MrWellness94

Hello Whitney2017,

I am sorry to hear that your health care providers aren’t doing their jobs. A dose of 75 is not even that high so I don’t understand why they can’t just increase your dose by 25. I have heard positive things from LDN for the treatment of autoimmune disease. I have read, however, that as you take LDN you might have to decrease your thyroid medication (not completely sure but most have had experience of this). Keep us posted as this option may help those that do not find relief from their thyroid replacement treatment. Additionally, if you aren’t already, incorporate a gluten free diet and keep up with vitamins and minerals. Good luck!

G2G2 profile image
G2G2

I've been taking LDN for almost three months & will have antibodies tested in about 2 months. Will post my results. Hoping LDN's helping.

shaws profile image
shawsAdministrator in reply toG2G2

Are they not increasing levothyroxine as you are also taking LDN?

G2G2 profile image
G2G2 in reply toshaws

No change in doses. I take NDT & T3.

shaws profile image
shawsAdministrator in reply toG2G2

If you take a combination I do not understand why your TSH isn't around 1 both professionals are negligent.

The aim, once diagnosed, and given thyroid hormones, is that our TSH should be 1 or lower. So you need thyroid hormones before LDN.

G2G2 profile image
G2G2 in reply toshaws

Don't understand how you know my TSH, which is below 1 & has been for a while. Perhaps you're confusing me with someone else. I've been taking NDT & T3 years before LDN.

shaws profile image
shawsAdministrator in reply toG2G2

Yes, I did confuse you with Whitney's result, as I had scrolled back to read what the TSH was.

Whitney2017 profile image
Whitney2017 in reply toshaws

The nurse explained to me that I may need to decrease levothyroxine when taking LDN and should get regular blood tests to check levels x

shaws profile image
shawsAdministrator in reply toWhitney2017

That's good that the nurse seems to know about the effect of LDN and hope it is successful for you.

humanbean profile image
humanbean in reply toWhitney2017

If your TSH is 6.2, the last thing you should do is reduce your levothyroxine. You are woefully under-medicated already without making the problem worse.

LDN would have to have an astonishing effect to reduce your TSH to very low levels (if that is what it does).

I've been reading thyroid forums almost daily for several years and I have never heard anyone say that this is what LDN does.

Your GP and endo are being sadistic in refusing to raise your levothyroxine. You should find a new GP and a new endo or self-treat. Healthy people have a TSH much lower than 6.2 - see this post :

healthunlocked.com/thyroidu...

LAHs profile image
LAHs in reply tohumanbean

Yes, TSH of 6.2 is a raging thyroid problem. Low Dose Naltrexone (LDN) is new to me and I had to Google it before replying. As far as I can see it reduces antibodies as well as being an anti-inflamatory. My first concern would be that the presence of antibodies signals that a "fight" is going on somewhere in your body. Why would suppressing antibodies do any good? We would still need T4 and T3 etc and LDN does not cause absorption nor production of those hormones. I don't really see any connection.

Whitney2017 profile image
Whitney2017 in reply tohumanbean

The problem is my tsh is 6.2, but my t3 is 9.89. X

shaws profile image
shawsAdministrator

You can care for your own health as your TSH is too high, even though you take levo which is obviously not on an optimum dose. TSH is best around 1 or lower.

Many members look after their own health instead of being kept unwell by the (supposed to be) Professionals.

You definitely need an increase.

My assumption is that both believe that if the TSH is below 10 (the criteria for being diagnosed in the UK) i.e. 6.2 that you are on sufficient levo.

Why go to people who keep you unwell and may cause more problems for you in future and are obviously inefficient..

Muffy profile image
Muffy

It would be interesting to know what your ft4 and ft3 levels are. Do you have those results?

Whitney2017 profile image
Whitney2017 in reply toMuffy

T4 is 108 (59-154)

T3 9.89 (3.10-6.80)

humanbean profile image
humanbean in reply toWhitney2017

Those are very odd results. The first result is most likely Total T4, the second result is most likely to be Free T3. Were they carried out by the NHS?

Whitney2017 profile image
Whitney2017 in reply tohumanbean

I had these done through medichecks. The GP isn't interested in testing anything but tsh

humanbean profile image
humanbean in reply toWhitney2017

Presumably you were told the level of your Free T4 - could you post that too. Medichecks wouldn't just give you a Total T4.

Did you get any nutrient levels tested i.e. vitamins and minerals?

If you've had a Medichecks test done it would have been easier for us all if you had posted the whole lot in one go along with reference ranges.

Whitney2017 profile image
Whitney2017 in reply tohumanbean

Thyroid Function

THYROID STIMULATING HORMONE *6.61 mIU/L 0.27 - 4.20

FREE THYROXINE 17 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 108.0 nmol/L 59.00 - 154.00

FREE T3 *9.89 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY *445.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES *382 IU/mL 0.00 - 34.00

HAEMATOLOGY

Vitamins

ACTIVE B12 45.7 pmol/L 25.10 - 165.00

FOLATE (SERUM) 7.35 ug/L 2.91 - 50.00

25 OH VITAMIN D *35.9 nmol/L 50.00 - 200.00

BIOCHEMISTRY

Inflammation Marker

CRP - HIGH SENSITIVITY *8.5 mg/l 0.00 - 5.00

Iron Status

FERRITIN 88.2 ug/L 13.00 - 150.00

HLAB35 profile image
HLAB35

Not sure what motivates these professionals to give such inadequate support. I assume that they're just trying to save their own department / practice money and couldn't care less that it'll have repercussions elsewhere in the system.

I suspect that you may benefit from selenium - as you have high antibodies, possible poor thyroid conversion and lots of infections. Zinc lozenges with riboflavin and vitamin C are good too. I'd definitely start on a low dose of selenium methionine unless you have any conditions (e.g. high iron) or you're on any meds that would be made worse by selenium.

You really need a thorough blood test so you can self-treat most effectively.

shilling11 profile image
shilling11

Hi,

I'm also thinking about trying LDN after thyroid meds (Nature Thyroid 2 1/4 grains), gluten free diet etc etc are not bring my antibodies down. Currently 1600.

Are you able to tell me where you are getting the LDN from as my doctor know nothing about it and won't prescribe.

Whitney2017 profile image
Whitney2017 in reply toshilling11

I'm getting it through dicksons chemist in Scotland. If you Google them, all the information is on their website. It's £35 consultation, then £20 per prescription x

Hillwoman profile image
Hillwoman

I've been taking LDN for almost three years and I've found it very beneficial for the symptoms of early rheumatoid arthritis, chiefly severe swelling and pain in the wrists and thumb/finger joints. If I forget one or two doses the inflammation starts up again.

I haven't tested my TPO & TG abs for quite some time, but I'm not aware of any specific effects of LDN on my thyroid health.

shilling11 profile image
shilling11

HI, Thank you so much for getting back to me.

Thanks also for all the info, I will get on to them.

Please can you keep me informed of how you're doing, I'd love to know.

Whitney2017 profile image
Whitney2017 in reply toshilling11

I will do. I have done a lot of research on LDN-really hoping it has a positive effect on my Antibodies and my immune system which is really struggling at the minute x

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