Anyone change back to levo. from NDT.

[lucylocks]

Hi

I have not posted for a while but have been popping in to read posts.

Last year my G.P. reduced my dose of levo. from 125 mcg. to 100 mcg. because of my low TSH even though my T4 and T3 was not even mid range.

I was feeling O.K. on 125 mcg. not brilliant but O.K. I felt that I would have benefited  from an increase or by adding T3.

I gave all the info. I had gathered to my G.P. saying you cannot just go by TSH but she was not having any of it so I told I was going to self treat by either adding T3 or using NDT. She said this was up to me and she would monitor me and in the meantime she would write to the endo. for more information.

Before starting on NDT I ordered the 24 urine test from Genova and the result showed that I was converting the T4 in levo. into T3 but I was not taking enough of it.

I decided to try WP Thyroid because it has the least fillers in. I began on a small dose and gradually increased. After a few weeks I felt worse but persevered, I then felt a little better. When I had been taking 1 1/2 grains for three weeks I was due for another increase but I started to feel spaced out and disorientated so reduce back to 1 1/4 grains. After a few days the feelings subsided and I began to feel better and the following week was the best I had felt in a long while.

After a week on 1 1/4 grains I had my blood tested and results were

TSH  2.8  range 0.35 - 4.7

T4  7.4  range 7.8 - 21

T3  5.3  range 3.8 - 6.0

Since the blood test I have increase to 1 1/2 grains again but I now feel worse.

My G.P. ask me to go and see her as she had heard back from the endo. and said she could now increase the dose of levo. as endo. said he does not worry about about the low TSH as long as it does not go under 0.5 and T4 does not go above 18.

She said she would work with me to get levo. dosage right so I feel better.

I had high hopes for NDT. but feel it is not working for me at the moment so I do not know whether to changed back to levo. now my G.P. has said I can increase my dose.

As anyone changed back to levo. after trying NDT, if so did you just go back to your usual dose or did you start low and work up again.

 I really do not know what to do, should I give the NDT a little while longer or change back to levo.

Any advice would be really appreciated.

Many thanks browny.

[shaws]

When you begin NDT the dose should be increased gradually every 2 weeks till you feel better. Sometime when the dose is a little on the low side it can backfire a bit and symptoms return.

[lucylocks in reply to shaws]

Thank you for your reply shows,

I really am not sure what to do as I felt better when I reduced from 1 1/2 grains to 1 1/4 grains, maybe I should reduce again to see how I feel.

[shaws in reply to lucylocks]

Yes, that's wise as sometimes a 1/4 makes all the difference (either up or down) might be the perfect dose. I hope so.

[Heloise]

browny,  Are you worried about the blood tests?  Your TSH is high probably due to the fact your T4 is low but your high T3 is a little troubling.  You don't seem to be using your T3 if you don't feel improvement.  I don't know if it is a possible pooling in the blood.   From NAH:

nahypothyroidism.org/thyroi...

Even common medications, including benzodiazepines such as diazepam (Valium), lorazapam (Atavan) and alprazolam (Xanax), are shown to inhibit T3 uptake into the cells of the body but have no effect on transport of T3 into the pituitary (61).

[LindaC in reply to Heloise]

Thank you Heloise, very good link!  I have not, do not and never would (for obvious reasons) take any of those meds. I take thyroid hormones (T3 and used to, sometimes still NDT) so I'm careful when anyone [including medics] asks me about "Medication you're taking", to specify the word 'hormone'  

[Heloise in reply to LindaC]

Yes, indeed, Linda.  I try to avoid even aspirin at this point.  No need to cause more work for the body than just healing.  I did very well on T3 and when it is more available, I will go back to it.   NDT is not quite as effective.   Best wishes to you.

[lucylocks in reply to Heloise]

Hi,

many thanks for your reply,

I am not really worried about my blood test, maybe a little concerned why my T4 is below range. I am not sure why you say my T3 is a little troubling as I thought the idea was to get T3 up in the range.

Thank you for the link, I have had a quick look but I will really need to study it more to understand it

[HIFL]

Like you, I don't feel well when I raise above 1.5 grain.  Your labs look very similar to mine, with low T4 and relatively high T3 on NDT.  This is expected due to the high T3 content in NDT.  

There are some charts on this page that illustrate the problem with NDT-only and T4-only.  tiredthyroid.com/rt3-3.html  You and I look like Profile I.  The problem is, if you go back to T4-only, your labs will probably look like Profile II.  The answer for me was to combine NDT with levo to get both T3 and T4 to comfortable levels.

[lucylocks in reply to HIFL]

Hi,

many thanks for your reply,

I actually felt better when taking 1 1/4 grains but I had only been taking it for a week before the blood test, I was taking 1 1/2 grains for three weeks previous to this, so not sure if my results are from taking the 1 1/4 grains or from the build up 1 1/2 grains.

How much levo. do you add to your NDT.

I have looked at the link, it is interesting.

[HIFL in reply to lucylocks]

It seems 50-75 mcg works best for me.

[lucylocks in reply to HIFL]

Thank you for replying,

did you start off at a lower dose of levo. and worked up to 50-75mcg. and how much NDT are you taking with it.

I feel exhausted today so I need to do something  about my meds.

Thank you 

[HIFL in reply to lucylocks]

Yes, if adding T4, always start low.  I started with 25.  Each time you increase T4, you should drop some NDT.  Your lab work will help you fine tune your dose.

[lucylocks in reply to HIFL]

Many thanks.

[Glynisrose]

No, levo did nothing for me.  I will stick to NDT which has removed the nasty symptoms.  Its a shame you are thinking of going back, jus4 remember that levo is no good long term.

[lucylocks in reply to Glynisrose]

Thank you for your reply, I did feel better on 1 1/4 grains so maybe I should go back to this dose and see how I feel.

At the moment taking 1 1/2 grains of NDT I do not feel any better then when I was taking levo.

[hose1975 in reply to Glynisrose]

The vast majority of people do just fine on T4-only treatment in the long term. To pretend otherwise is just wrong. This is not to say that everybody does just fine on T4-only treatment long term; that is why most members of this forum are here.

[Heloise in reply to hose1975]

hose, I don't mean to argue your point but I must say EVERYONE I personally know is not doing fine and all of them are longterm Synthroid users.  I realize this is not a large group but EACH of them are on other medications for either heart, lung, or cancer.  Perhaps they have insufficient cofactors of iron or cortisol.

This is not to say they would do better on NDT since they have never tried it.   And, of course, the definition of fine would have to be more specific.  It also shows I've had very little influence on these people

[hose1975 in reply to Heloise]

I think the key thing there is that you're referencing people with other serious illnesses. They might've done just fine on T4 only if not for the heart, lung, cancer et al problems, they might not have done. To suggest otherwise is, I think, a little disingenuous, and gives the impression that you ascribe these other conditions to their continued use of T4. (I'm sure you don't think this.)

[Heloise in reply to hose1975]

In fact, I do.  These illnesses all occurred after their thyroid diagnosis.  The one with atrial fibrillation followed a few years on Synthroid.  (Never smoked)  The one with COPD (also never smoked).  They are also obese only AFTER T4.  The only one who is not terribly overweight credits her constant diarrhea for keeping her weight down.  She was also on anti-anxiety drugs for many years. 

I do ascribe much of this on their thyroid......wrong treatment, lack of treatment and/or delayed treatment.  I'm even getting to believe that T3 should be the only treatment much like insulin is the only treatment for diabetes.   Is that blasphemy?

[hose1975 in reply to Heloise]

I would gently remind you that correlation does not equal causation: it's possible that T4 alone is to blame for all their ills but it's also probable that there are other things going on which are unrelated to their current thyroid meds situation.

By the way, I'm sure you're aware that insulin is only standard treatment for types 1 and 1.5 diabetes. Many people with type 2 diabetes hope fervently never to let things get so bad that insulin is necessary.

[LindaC in reply to hose1975]

It would seem that, due to insufficient thyroid hormone(s), particularly over the long run, most people are more likely to wind up with way more serious illnesses.  Surely by now we all know that without an effectively functioning thyroid, the whole system is compromised?  Superfluous info. by any standard!

These conversations tell us nothing other than that some may do just fine on T4, [I was as ill as a dog... within weeks simply couldn't tolerate it]; many others do great on NDT and some on T3 alone.  A [statistically ] significant amount of people have been left undiagnosed for so long that they will remain compromised until their death! 

Causation is another ball game and not really applicable here.  Likelihood, as inference, given the long history of hypothyroidism is certainly adequate to diagnose in the presence of signs/symptoms, which appear to 'fox' this rag bag field of medicine [left such a wealth of knowledge!].

The vociferous, nay baying, gaggle of endos who seem hell bent on seeing anything other than T4 prescribed, surely need to be investigated asap?  Thyroids are vital for life!

[hose1975 in reply to LindaC]

I'm not disagreeing with that, you are correct. I do, however, take issue with people who believe *and state as fact* that T4 is the root of all ills when statistically it works well enough long-term for the majority of people taking it. Those of us who had problems with it either immediately or after a while for whatever reason are very much the minority. And while being under-treated is certainly not conducive to good health it is surely dangerous to assert that T4 in and of itself is dangerous.

Do I believe that we need a broader arsenal of medications to treat hypothyroidism? Absolutely. Do I believe that T4 works for most people? Yes. The two are not mutually exclusive.

[LindaC in reply to hose1975]

Much within medicine is neither mutually exclusive nor jointly exhaustive... but a lot of people 'know' in the strongest sense whether they are feeling ill or not. Resorting to statistical terminology or quasi-logic doesn't take this any further. 

Perhaps T4 alone is dangerous long term? I know not: how are you so confident in your assertion?   Also, believing that T4 works for most people is a strange claim!

Numbers re blood tests are far from the full picture and people unnecessarily suffer due to bullish little notions that would have our 'thyroid forefathers' turning in their graves [pardon, that really is unintentional ]. 

[Heloise in reply to LindaC]

You said it so much better than I.

You need good conversion if on T4 only and that means you need to have adequate adrenal function and a healthy liver.  Who has that??

[LindaC in reply to Heloise]

No, I really enjoy your posts   Heloise, when most of our functioning is not going so well... exactly, who has good conversion?  Heart also suffers... everything does! 

T4 gave me a couple of weeks of feeling 'top o' the world'... then the weird 'toxic' crash.  NDT [Armour in my case, I couldn't get away with Erfa] 2 1/2 years of being really well [in comparison] - I was too scared to keep upping it so stuck at 1 1/2 Grains, then T3 for 3 1/4 years now... still not 'fixed' but all of this had insidiously accumulated for decades.  My health is compromised as a result... I'm as tough as old boots because I have to be  no docs going to be looking out for many of us!

Be well Heloise xx

[lucylocks in reply to hose1975]

Hi

Yes I agree a lot of people do well on T4 only.

I was O.K. but there was room for improvement but instead of G.P. increasing my dose she decreased because of low TSH.

She has now said she will work with me after speaking to the endo. for advice.

Not sure what to do to tell the truth, stick with NDT a while longer or changed back to levo.

I really had high hopes for NDT, maybe I am expecting too much too soon but I have been taking it for about eleven weeks now and have only had one good week.

[Glynisrose in reply to hose1975]

Who told you that, a doctor?

[lucylocks in reply to Glynisrose]

No, I do actually know people who are well on levo.

Glynisrose, there is no need for sarcasm.

I had high hopes for NDT but I am not feeling any improvement, I have been taking it for eleven weeks now and have only had one good week. Maybe I need to play around with the dose.

I am quite willing to persevere but as yet apart from the one week I do not find any improvement over levo. 

.

[Pastille in reply to Glynisrose]

Glynisrose  why is levo no good long term please? I didn't know this

[Heloise in reply to Pastille]

stopthethyroidmadness.com/t...