Advice please - bit long, sorry

Hi all, I am a bit stuck so would be really grateful for any advice, or just support really.

As some of you may know, I was really ill for some months at the beginning of the year but was refused treatment by a variety of GPs & an NHS endo so ended up self medicating with NDT (I had a TSH of 4 at this point but TG antibodies over 100 times above range).

I followed Dr P's book, working on iron, B12, adrenals etc & was doing well, getting up to 1 3/4 grains where I felt very slightly as if I'd drunk too much coffee. My FT3 & 4 were both right at the top of the ranges then so I dropped back to 1 1/2. After 8 weeks on 1 1/2 I didn't feel so well, with aches & pains & spotty itchy scalp coming back. I also then had a severe ear infection & viral laryngitis in quick succession, which I now think may have been thyroid related too from some info I've read.

I was persuaded by a private endo to try standard levo in October, with the aim of then getting my GP to take over prescribing if I did OK - obviously with an eye on the cost etc. I took 75mcg for 3 weeks & felt absolutely terrible & my GP still refused to have anything to do with it anyway, so that plan failed! I didn't think 75 was enough anyway but was over-ruled. A blood test after those 3 weeks showed these results: TSH 1.22 (0.27-4.2) (risen from suppressed in just 3 weeks!) FT4 18.5 (12-22) FT3 4 (3.1-6.8).

I went back onto 1 1/2 grains NDT & had another test after a month & TSH 0.04, FT4 15.3, FT3 4.7 (same ranges) & put my dose up to 2 grains as I still felt unwell.

I have been on 2 grains now for 5 weeks & still don't feel right, particularly with achy shoulders & awful itchy spotty head again. But the worst thing is the anxiety. I have suffered with depression before & have been under a lot of emotional stress recently but I've never had this awful terrifying anxiety & insomnia, I'm exhausted & can't concentrate on anything.

So would it be reasonable to increase my dose slightly? Maybe 2 1/2 & 2 alternate days? I am slightly puzzled by this as back in May I was heading to over medicated on 1 3/4, but I feel like I need some more. Or should I just be patient & give 2 grains a bit longer? Or does anyone have any other advice?

Really confused & fed up - & utterly hacked off with doctors. :-(

28 Replies

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  • Before the blood tests came in people were medicated until they felt better and clinical symptoms gone. Normal doses varied between 200 and 400 mcg. Nowadays, too much notice may be taken of the blood tests and where the patient doesn't feel in the least bit over-medicated the medication is reduced due only to either the TSH or blood tests.

    If you read the first two q/a on the following link, it may be helpful:

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

    I hope this answer will help too. Go to the date November 21, 2003

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

  • Thanks shaws. I was just puzzled by needing more than I did in may, my antibody levels have dropped considerably and I didn't have anxiety and insomnia when I was ill originally, although lots of people seem to suffer with these. I sincerely wish I had never tried the Levo!

  • Many report they need more in the winter months, how's your vit D? J :D

    (Your story sounds just like mine, TSH not high enough to be treated, so tried NDT last December & now trying Levo, I was getting more palps at 1½ grains).

  • Vit D wasnt too bad, 87, with over 50 considered adequate, although I think people here believe it should be higher. I have been supplementing anyway.

  • Maybe by taking levo your body is finding it difficult to adjust. Levo takes about 5 weeks to leave your system. This is from the link above:-

    "If a new dose of Armour contains too little T4 and T3 to benefit you, you’ll have to go through another evaluation period. And you’ll have to do this again and again until you find what I call your "therapeutic window"—a small dosage range that optimally benefits you without overstimulating you. That optimal dosage range is highly individual, but historically, the typical patient’s therapeutic window has been somewhere between 120 to 240 mg (2 to 4 grains). There’s no way to accurately predict what your therapeutic window is. Until you find it, you may not improve much from the Armour. But once you do, you’re likely to feel that the wait was well worth it."

    I am sorry you are going through a rough patch at present.

  • Maybe by taking levo your body is finding it difficult to adjust. Levo takes about 5 weeks to leave your system. This is from the link above:-

    "If a new dose of Armour contains too little T4 and T3 to benefit you, you’ll have to go through another evaluation period. And you’ll have to do this again and again until you find what I call your "therapeutic window"—a small dosage range that optimally benefits you without overstimulating you. That optimal dosage range is highly individual, but historically, the typical patient’s therapeutic window has been somewhere between 120 to 240 mg (2 to 4 grains). There’s no way to accurately predict what your therapeutic window is. Until you find it, you may not improve much from the Armour. But once you do, you’re likely to feel that the wait was well worth it."

    I am sorry you are going through a rough patch at present.

  • Harry, sorry you're not feeling well. It's not too soon to raise NDT but it would be better to try 2.25 grains daily rather than 2 and 2.5 alternate days. Your last thyroid results on 1.5 grains don't indicate overmedication as a reason for your anxiety.

    It's not uncommon for people to require higher doses during the winter and to reduce dose during the spring/summer.

  • I was thinking undermedicated causing the anxiety as I've seen depression and anxiety as hypo symptoms, but curious I didn't have it when I was so poorly at the start of the year, maybe I just felt too physically unwell to be anxious too? I only have 1 grain tablets so I'll try & split them down to quarters as accurately as I can

  • Harry, your last results don't indicate undermedication either but a dose increase, although it will suppress your TSH should also improve your FT3 which could be higher in range.

  • Thanks. Just feel so horrible :-(

  • HarryE when were your antibody levels last tested? I think changes in TPO levels have made me feel "off" a number of times over the last year. My TPO showed very raised levels 12 months ago and things improved after going GF and lactofree. I have also been under a lot of stress this last year and I do think stress levels can make big difference to how your body copes with medication etc and also the time of year. Do hope things improve for you soon

  • Just last month. They have dropped from a high of 1823 to 242 (range to 115) so they have come down a lot. I really feel that those 3 weeks on Levo really knocked me for six!

    But yes, stress really doesn't help

    Thanks

  • Hi - just a thought have you considered adrenals. The link below may help.

    stopthethyroidmadness.com/m...

  • I did work on adrenals before starting ndt & still take nutri adrenal extra, but just 1 a day. But I'll think about it again, thanks

  • Harry, what's your ferritin level? Your FT3 seems a bit low - conversion issue maybe? And maybe you're zinc deficient (itchy scabby scalp makes me wonder)?

  • Ferritin was really low to start with, right at the bottom of the range, but I have got it up to about 80 & am still supplementing. My Vit C has zinc in it too, so I think that's OK although it's not been tested. My scalp was fine for a while, it has gone downhill again since all this messing about. I think the FT3 is low because the NDT hasn't built back up again yet, the ratios look OK to me

    Thanks

  • Other thoughts - how long were you on 1 3/4 grains for before you dropped back to 1 and a half?

    And what about timing of doses? Are you taking all at once or spread out through the day?

  • I was on 1 3/4 for about 3 weeks until I felt a bit whizzy. & I take it all at once at the moment, although when I was first raising it I split it.

  • Hi Harry,

    Sorry to hear you are having a bad time. I'm in a similar ish situation to you... And have been self medicating on NDT for about 3 weeks and steadily improving. However, I'm also certain I had extreme adrenal fatigue as well... So I treated this too.

    As all the hormonal glands are interlinked, could it be that some of them are not right? Are you following the dietary advice?

    If you haven't already, I suggest reading dr james wilson's book on adrenal fatigue...hopefully that will help.

    All best,

    Sam

  • Thanks - I did start with working on adrenals back before I started self treating & am still on 1 Nutri Adrenal extra. My diet is pretty good, & I'm not gluten intolerant.

  • Harry, in my book, your FT3 is way too low. It isn't even mid-range. I'm really not surprised you're not feeling good, I'd be on the floor with those levels! My advice would be to continue increasing, slowly, until you feel good. I agree with Shaws, never mind the blood tests, what's important is how you feel, and at the moment, you don't feel good. So...

    Hugs, Grey

    PS Magnesium, magnesium, magnesium!

  • Thanks! Yes I take magnesium too, and have Epsom salt baths

  • Good! :) But there might not be enough zinc in your vit C. How's your B12?

  • It was OK, but not great, but been supplementing that too so that should be OK. I agree really, I think my t3 has dropped & I need more. Guess I just needed a hand to hold as I feel so down

  • Yeah, I know what you mean. It gets lonely out there sometimes.

    Well, your T3 certainly has dropped. But to know if it's just that, you'd have to get your T3 up again to a decent level and see how you feel.

    Take care. x

  • So sorry to hear this, Harry.

    Have you thought about trying a little T3 with your NDT?

    I consider myself a work in constant progress (as you may recall). After advice from the good folk here I have recently taken out one grain of my (2 grains of) NDT and replaced it with 25 mcg of T3. Last time I tried T3 I didn't get on with it at all. Now I am feeling the best I have for years. I find it irritating beyond belief that what makes me feel well one month suddenly apparently ceases to do so - but that's our world!

    Hope you find a new 'sweet spot' real soon.

    x

  • Thanks. I haven't simply because I know I can get my FT3 high just on NDT, but I'll think about it if NDT on its own doesn't do the trick. It's useful to know things can still change though - although it would be much easier if they didn't!

    I think maybe dropping back to 1 1/2 & then being poorly with the infections, followed by the 3 weeks of levo & a big dollop of stress have just knocked it all right back over quite a period, so it needs building back up.

  • Bear in mind that the only thing your body does with T4 is turn it into T3. So if you're not converting well for any reason you may not be getting all the benefit of the T4 in your NDT. There isn't a vast amount of T3 in NDT.

    It sure is infuriating how easily one's thyroid apple cart can be upset. Sympathies.

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