Never got on with Levo.
Kind of thought I got on ok with NDT and have been taking it for 3 years now but maybe I was treating the TSH level and not actual symptoms. Initially I thought the NDT worked but I also started testosterone therapy at a similar time and maybe it was this that really gave me relief - I need to know for sure I guess.
Been off NDT for 2 weeks now and feel fine so far - how long for symptoms to really hit if they do?
I all but stopped levo. Felt great for 3 months. Then I became very very hypo and ill.
I tried this—during what I can now only describe as my “insanity period”. My FT3 and FT4 levels tanked within a fortnight and my TSH stayed suppressed. I felt ok until I didn’t another couple of weeks later. It was rather like falling off a cliff.
And then it took an awfully long time to get back to feeling well again. 
But… to some extent how you fare with this is going to depend on how much NDT you were taking I guess—was it much?
Testosterone isn’t going to replace thyroid hormone.
But some of the symptoms are similar.
I don't like the idea of taking a lot of medicine for life so I am going to make this one justify itself.
I was taking one grain of NDT a day, which I moved to 2 tabs on M/W/F and 1 on other days. I have had some oesophageal and swallowing issues that started about the same time I started NDT so I have to find out if that's the cause - this seems the only way to know for sure.
Being honest, that’s not a great way to take NDT. It doesn’t really lend itself to being taken in varying doses. The T4 in it isn’t an issue because of its longer half life but T3 needs to be taken much more consistently. Dose changes in NDT give me indigestion (for the first few days of going up or down a dosage). Can I ask why you didn’t just take 1.5 tablets a day instead?
Anyway… perhaps that’s not important cos you’ve stopped for now. 
I wish you all the very best with it but fear you might struggle in the coming weeks. I really hope you don’t and I just want to add that I completely get why you want to try this. Been there. I found the T-shirt didn’t fit though!
Let us know how it goes?
On NDT it’s absolutely essential to take exactly same dose every day because it contains T3
Likely to have very low vitamin levels having been taking NDT incorrectly
Recommend getting full thyroid and vitamin testing done asap and certainly 6-8 weeks after any dose change
Replacement thyroid hormones, aren’t a “medication”. They replace hormones your own thyroid is no longer making
You wouldn’t expect a diabetic to “manage “ without insulin
are you in U.K.?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
On NDT - day before test split dose into 2 or 3 smaller doses spread through the day. Last dose approx 8-12 hours before test
This gives highest TSH and most consistent results. (Patient to patient tip)
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.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
As to how quickly you feel unwell…..perhaps 2-3 weeks….perhaps 2-3 months
Personally I “fell off the cliff” 10-14 days after stopping levothyroxine. Took over 9 months to recover enough to walk 50 meters. And further 2-3 years to get replacement dose fine tuned to give some normality.
Needless to say I never, ever stopped replacement thyroid hormones again
The NDT tablets are too much of a pain to split in half and store elsewhere which is why I did the M/W/F thing. 1 tablet is not enough, 2 is too much.
That said my latest Thyroid test came back with a TSH of 4.5 so I am not even sure my Thyroid-S NDT is working properly anymore anyway.
Maybe my own thyroid can do a better job than the tablets. I was just over 5 before starting treatment. with a better T4 level and the same T3 level.
when adequately treated on NDT TSH would be below one
Most people need to split NDT as 2 smaller doses per day
But essential to take exactly same dose every day
So results suggest under medicated
Come back with vitamin results once you get them
TSH over 3 suggests hypothyroid
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Do you have high thyroid antibodies
Are you male or female
Approx age and weight in kilo
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
have you tried levothyroxine
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Been through all that fuss previously.
I know enough about thyroid and medication at this stage. What I do not know is how important medication is to me - I need to find this out and the only way is to stop one thing at a time.
If the medication keeps changing potency and/or my body reacts differently to it then it is a moving target that gets me nowhere.
Need to start again from a baseline and logically that baseline needs to be a period of time without medication.
It’s probably a good thing in your case that your TSH is higher—that does at least suggest the pituitary feedback loop is still working for you. If your thyroid can rise to the challenge then hopefully it will be able to respond to the TSH call and generate enough thyroid hormone. It might just work—I really hope it does.
Alas, my TSH just stayed suppressed, which was utterly frustrating. No signal to make my thyroid fire back up again.
If I were to ever try it again (when you self source NDT these thoughts come up, though you hope never to have to act on them!), I’d reduce my dosage much more slowly and give the hypothalamus-pituitary-thyroid axis a chance to come back on line. Cold turkey was definitely not the way forward for me!
I sympathise with this. I never felt unwell before hypo treatment started. Tests certainly showed I was at least 'clinically hypo' and I had a full range test done privately. All I hoped for was that the hypothyroidism was responsible for my weight gain and my long-term insomnia, but taking the medication did nothing for either, and with mounting other tablet-prescriptions for other issues I feel it's not good to take so much. I was considering the same route as you, and waiting to see.
Trill
Suggest you make a new post of your own with recent thyroid and vitamin results
Low GFR linked to being hypothyroid and should improve when thyroid and vitamin levels are correct
ncbi.nlm.nih.gov/pmc/articl...
The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons.
eje.bioscientifica.com/view...
Although it is far too complex for me, your link certainly raised avery important consideration which had not occurred to me: CKD. As for the tests you suggest, here in the UK I expect you know that is just not going to happen. The NHS is not exactly in a position to do more than the bare minimum, and money is tight for expensive private tests. so I will just stay as I am. So many conditions and medicines interact. Thank you.
A good GP should follow guidelines and test vitamin D, folate, ferritin and B12 for anyone on levothyroxine
NHS test should include TSH and Ft4
NHS private test for TSH, Ft4 and Ft3 normally £26.10 …..currently reduced to £23.80
healthunlocked.com/thyroidu...
Levothyroxine must be taken on empty stomach and at least 2 hours away from any other medications or supplements
Many members take levothyroxine in middle of night to gain maximum absorption
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
I felt good when I stopped T4 for about 3 weeks on nothing and then I became a useless potato
I stopped my Levothyroxine on the suggestion of an NHS endo who thought my symptoms were not thyroid related. The first week was a nightmare and I suffered with a whole host of horrible symptoms, by the second week I was feeling the best I had felt in years. But this did not last and by the end of the second week I could barely get out of bed and my memory was extremely poor and my TSH had risen to 14. I had to restart Levothyroxine although now I take the oral solution which I can tolerate better but I still suffer many side effects.
A 35 day washout should take you pretty close to your unmediated “baseline”.
This would take you down to somewhere 1% and 6% of the dose you were taking. Doesn’t account for endogenous T4 your thyroid produces. They always seem to do these tests on healthy volunteers with functioning thyroids.
Patti in AZ
It’s not quite a simple as that. Someone who’s been taking thyroid hormones won’t be back to their unmedicated baseline after 35 days just because they aren’t taking it any more.
The whole hypothalamus-pituitary-thyroid feedback loop takes time to recover. Thyroids shrink when you take endogenous thyroid hormone. They stop being capable of producing as much thyroid hormone as they did pre-treatment. Over time, if a thyroid is healthy enough, it’ll grow bigger again in response to thyroid stimulating hormone. But if it isn’t healthy, if it’s already been partly destroyed by autoimmune disease or if the cause of hypothyroidism was an issue with the pituitary gland, you won’t get back to where you were before taking thyroid hormones.
If you genuinely didn’t ever need replacement thyroid hormones in the first place it can take months and potentially over a year to get back to where you were before starting to take them.
How long after stopping NDT back to \"normal\"?
How long till I feel better
How long after quitting NDT would I be back to baseline?
