NDT dosing. Nearly there, but is 3 grains too much?

Hi All

This was my test results 9 months ago on 2 grains of NDT

Thyroid Function

TSH 0.58 0.27 - 4.20 IU/L

Free T4 12.96 12 - 22 pmol/L

Free T3 4.81 3.1 - 6.8 pmol/L

No problems with B12 or Iron Vit D was very low. Critical. No Antibody problems.

I have taken 10,000 UI of Vitamin D for 6 months and 6,000 UI for the last 3. Need to get that retested.

Most of my symptoms disappeared on 2 grains, except for depression, and joint muscle pain.

I still have those symptoms and now they are deeper seated than just the thyroid , unfortunately, (even though thyroid replacement has helped on both accounts), but seeing specialists in both, so good news there. I suffer from dystonia, which is a dopamine related problem so my depressions come from their as even had MRI scans confirming this.

But the really good news is that all the other symptoms have just gone :)

Anyhow after 9 months on 3 grains, I got my results back.

Thyroid Function

TSH L <0.005 0.27 - 4.20 mIU/L

Free T4 13.91 12 - 22 pmol/L

Free T3 6.63 3.1 - 6.8 pmol/L

I am obviously on a top end of my dose, and maybe dropping down to 2.5 grains in the future is a good idea.

Because i often have to have blood tests and self medicate on NDT, I am worried by the poor education of doctors (as has happened in the past) even though I know TSH doesn't matter a hoot on NDT, with a TSH of 0.58 on 2 grains maybe this is a better level and wont be taken off and on medication all the time and having to restart again every time i may have to stay in hospital.

I have one doctor who is more open and say could prescribe something like 100mcg of T4 and 20mcg of T3 that would be good, but i maybe being too optimistic there.

I take Thyroid S which is extremely good, but also have taken RLC labs (at 2 grains) in the past which was also good.

I am nearly there thanks for all your good help and support for the last couple of years, and in the latter stages of fine tuning, so any advice would be great.

Thanks

Russ

14 Replies

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  • Crunchieeagle,

    Your TSH is very suppressed but FT4 and FT3 are within range so you are not over medicated.

    Ideally we will all take the minimum dose it takes to make us feel well. If you felt well on 2 grains why did you raise to 3 grains?

    I would keep my thyroid meds by me in hospital so I can control when I take it. I certainly would not hand it over to be dispensed at whatever time was convenient to the nursing staff.

  • Thanks Clutter. I rose to 3 grains as most people said i was just slightly undermedicated, on 2 and I agreed with them. I am one of those hypothyroid patients who feel hot, and dont sweat much, so maybe it is to come down a touch now it is the summer, as on 2 grains as still felt a little oomph was required (but still felt sooooooo much better than i originally started) but i definitely dont I need that oomph now.

    When i have been in hospital the last two times in the last 5 years they look at all my medication and see my NDT and say what is this, and take it away, as it was not prescribed. If it was they would not question it. It is the way Exeter Hospital operate. In fact in Devon they only now screen for TSH only, for a full thyroid profile you have to arrange this yourself. Disgusting.

    Anyway I think i will go down to 2.5 grains and get retest again when the days get shorter :)

  • Crunchieeagle,

    So what happens about your thyroid medication if NDT is taken away? I'd keep it stashed in my handbag.

  • I have had just this conversation with friend and other half just in case. I intend not to hand it over or to get daily dose from visitors. I actually have prescriptions for my medication but not sure that even that would be enough for some hospital staff.

  • They search you when you are an inpatient, go through your personal belongings and everything. Believe me I have tried!

  • Crunchieeagle,

    That's outrageous! I would NOT put up with that.

  • I dont have a handbag, looks a bit camp on me lol

  • Crunchieeagle,

    It's a brave person who would delve into a woman's handbag uninvited, it's just not done. Perhaps you need a small manbag to keep wallet, phone and NDT in :)

  • When we take NDT our TSH will be lower and I shall give you a couple of posts by one doctor who used the same method as all doctors before the blood tests were introduced.

    web.archive.org/web/2010103...

    web.archive.org/web/2010112...

    Some people I have read take 5 or 6 gr.

    web.archive.org/web/2010103...

  • Thank you Shaws. Very interesting articles.

  • Crunchieeagle,

    Great you are feeling so much better.

    Results are a good indication but dictated by when we actually took our meds prior to the blood draw so it is prudent to also assess how we are feeling.

    If you feel overmedicated on 3 grains, reduce because any unused hormone that may not be excreted properly can have detrimental effects on other hormones. Therefore, it is best to medicate the least amount we can achieve well-being from.

    I think when we are really ill, we may need a little more thyroid hormone to support all the systems that have broken down but once the start of recovery has been found, it can be so progressively cumulative, to the extent I have actually reduced my NDT a little.

    Doctors don't like or understand the low//suppressed TSH that medicating T3 will give us. It may hinder your recovery if you have to keep stopping your meds every time you are in hospital but I don't know how to get around this, except have your friends smuggle it in to you.

    You may hopefully find that after an adequate amount of T3 has consistently saturated every cell for many many months, your muscle pain improves. Mine eventually did.

    And you may even find that your lack of dopamine-depression improves somewhat. Good luck.

  • Thank you Radd for your kind response, very informative.

    I never take meds 24h before blood was taken, but this was about 10:15am as i always try to take it early in the morning as possible.

    I will drop down now, maybe 2.5 grains is enough after being on higher dosages for a while. I have an appointment after an XRay should problems in my joints, and I have even had a brain operation called Deep Brain Stimulation and Botox every 10 weeks to keep the dystonia under control, which works really well.

    It's just such a shame in this world that i took an SSRI that caused the dystonia (known as secondary dystonia) as it is not genetic, that activated a couple of serotonin receptors so much that it downregulated a dopamine receptor so much that caused permanent damage.

    Still i will come back with the news which i think is arthritis and IF it is the immune system may trial some LDN that is talked about here, but i will await for the verdict.

    Thanks for sharing your experience with me.

    Cheers

    Russ

  • Re taking NDT into hospital can you decant them into an empty vitamin bottle? It's what I do when I carry them on holiday ?

  • If I had to spend time in hospital again and my NDT were taken off me I would threaten to call the police to report a robbery, the newspapers, my MP and local friendly councillor. No ifs, no buts.

    I suspect they would leave the tablets with me and avoid the hassle.

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