So finally my prescribed NDT is ready and here’s hoping that this is a major step towards symptom-free living. Tonight I am aching all over despite regular paracetamol, my ears are ringing like cicadas at Christmas, as usual, I have a pie tongue (new symptom I found here, he he!), and I am utterly bone weary. I don’t even know how to spell libido and sleep does not refresh, it’s just a break from the misery. It’s been 12 months of T4 dancing to TSH, disaster! TSH 5.57 (0.40-4.00), free T4 7.9 (9.0-19.0) and free T3 not measured (of course not!) — and that was after 12 months of “treatment” with my first endo. Then new endo and 3 months T4/T3 various ratios, then the last 3 months just T3 building up to 80mcg daily for the last 5 weeks. Latest results 2 weeks ago TSH <0.005, free T4 <5.2 and free T3 4.7 (2.6-6.0) — highest it’s ever been. With okay from endo I’m titrating the T3 down starting at 60 mcg, then reducing over 3-4 weeks to zero, while the 2 grains NDT build to steady state. Then full thyroid bloods after 2 months of just NDT. Please, please, please let me be one of the Hashimoto’s sufferers for whom this actually works. I am so exhausted and in pain. ...like most of us here waaah ;-((
My vitamin B12 is 477 (135-650)
S. Fol (Abbott) is 28.7 (>7.0)
Iron 20.9 (5.0-30.0)
Transferrin 3.0 (2.0-3.2)
TIBC (Calc) 66 (46-70)
Saturation 32 (10-45)
Ferritin 45 (30-300)
Vitamin D in April this year was 82 (51-140)
I’m taking all the recommended supplements, 100% gluten free for 15 years, recently started doing the single daily dose on an empty stomach at 4am. I think I’m absorbing more of the T3, feeling the impact more today (background headache, slight jittery feeling (not actual shakes) but I feel it more in my system. Either that or I’m delirious from waking at 4am to take meds! I think the 4am suits me, less stressful in a way, so I’m sticking with that for now. What about my nutrition levels listed above? I read you have to be up near the top for everything to get the most out of NDT. Could I be improving my levels? Is there anything else I need to be aware of going into this?
Many thanks in advance
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Blue_Bee
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Your TSH was high when you medicated T4 indicating you were quite under medicated.
You have only been medicating 80mcg of T3 for five weeks & your levels are just over half way through range. It is too early to start switching meds as often thyroid hormones need many months to be fully accepted & utilised by the body. Hypothyroidism is an insidious disease that effects all other hormones & other deficiencies/elevations will have repercussions on how thyroid hormones will work.
Your ferritin is too low. Many members who have had troubles accepting NDT have had low ferritin (and/or cortisol levels) and possible elevated thyroid antibodies. Have you had your cortisol checked ? ? ... Have you had your thyroid antibodies checked ? ? ... Do you have gut issues so nutrient/iron/hormone absorption/conversion impairments ? ? ...
You have been medicating T3 so your body is used to it but remember being Hashi, you will need to raise NDT quickly enough to suppress possible antibody activity.
I know T3 levels are meant to peak in the early am but I wonder as to whether your regime to wake specifically at 4am to take "NDT" will not be more destructive than conducive to well being ? ? …
Also, if taking thyroid meds all in one go is making you feel jittery, it may be wise to spread the dose over the day in order to put less burden on the adrenal glands. Many members multi dose to avoid the rapidity of T3 onset & this jittery feeling but also to avoid running out of fuel later in the day.
I am a fellow Hashi sufferer, undiagnosed for years & years & then due to severe adrenal issues & unknown nutrient deficiencies was made further unwell on T4 alone. I successfully introduced T3 to my T4 and now medicate NDT and am well.
Hi Radd, thanks for your very detailed, helpful reply.
* Yes, it was very high TSH and I was maybe the worst I’ve been so far. As soon as I just started improving on 125mcg daily, my first endo reduced it a few times to “get the TSH normal” eventually down to 75mcg for four days and 100 for 3 days. I found myself a new endo!!
* Yes, 80mcg T3 for 5 weeks, 60 for four weeks and 30 for 3 weeks (starting low). Three months of no major improvement is enough suffering for me and my endo agrees. I had improved symptoms when T3 was added to T4 and then that improvement faded to a bearable low. T3 on its own was a minor improvement on that low and still better at 80 mcg than the T4/T3 mix.
* Ferritin, now that’s a real possibility. I’ve just bought some liquid Floradix. What is the optimum range for Hashis?
* With the split doses vs a single dose at 4am or early morning, there are mixed views here on Thyroid UK, so I am trying out the 4am single dose for now. I actually find it easier to get back to sleep after 4am (early to bed) than say 5am. Plus the trauma of having to space food, coffee and tea around multiple doses, forget it! I just can’t bear that much self obsession all day on top of having to be vigilant against gluten ‘cos I’m Coeliac. I need to find a solution that I can do all my life and multi-dosing is not it. Well maybe twice a day.. or yeah whatever it takes to get well but I’m sticking with the NDT 4am, Ferritin treatment, gut health exploration for now. That’s about the maximum amount of experimentation this lab rat can handle in one go.
* In terms of antibodies and rapidly increasing the dose of NDT my endo has started me off straight on 2grams a day and I’m going to follow that for 2 months unless I start going backwards. Then bloods and symptoms check, then the next experiment.
Many members including myself saw a big improvement when adding a little T3 to their T4 regime. It is strange you saw the improvement and then lost it and might indicate there are other issues present.
Low thyroid hormone can result in lowered stomach acid secretion which may inhibit absorption of iron (& other nutrients). For many it is vital to have optimal Vit B12, Vit D, folate and ferratin levels in order that thyroid hormones may work. It is a vicious circle & any gut issues must be addressed.
Floradix contains iodine (ocean kelp) that can negatively alter thyroid action. It also doesn't contain much elemental iron. I don't supplement iron but members recommend Ferrous Fumarate taken with 500mg-1,000mg vitamin C (or Apple Cider Vinegar) to aid absorption and minimise constipation.
Consuming dairy products, coffee, tea, chocolate, eggs, and fiber with iron can interfere with the absorption as can medicating antacids, proton pump inhibitors (to treat acid reflux) or calcium supplements. All iron sups must be taken 4 hours away from thyroid meds to prevent it from binding and reducing making thyroid hormone availability.
The 4am regime is for people medicating T3 only as is thought to encourage poor adrenal action, as taking an hour before rising helps low cortisol levels to rise. If you think it will help you to take NDT at 4am, then good luck.
Rad, you’re a gem writing back with all that info, thanks. The malabsorption and low acid is the common factor time and again. Thanks for the heads-up on the best way to boost ferretin, I’m onto it! PPS I have been in for years, trying to reduce the dose but... My Gastro told me low acid is a myth but did agree PPIs can create absorption issues for B12 and iron (he also thinks I may have s tiny non-dangerous intestinal bleed. I’ve started the apple cider regime with the aim of getting off PPIs completely. I’ve been looking into the Selective Carbohydrates Diet (just meat and carrot mush ?!) Any thoughts on that?
Proton Pump Inhibitors block the action of the proton pump that produces and secretes HCL and withdrawal should be slow as can lead to rebound reflux. Especially if you have an intestinal bleed. (see link below). I don't know if you can supplement PPI's & ACV together. You could start a new thread for other members experiences.
I haven't heard of the Selective Carbohydrates Diet and just eat a clean & varied g/f diet. I am not a natural meat eater but have to cook it for the family so eat it as believe it crucial to our well being & immune system.
All proteins in the body are in a continuous state of turn over because protein containing tissues are constantly being repaired so your body needs a constant source to maintain itself. When we don’t get enough the body will allow breakdown of muscle and lean tissue, etc in order to recycle amino acids to keep vital structures (bones, etc) up to par. And both B12 & iron supplied in protein are key to converting T4 - T3.
I keep my Vit B12 levels top of range as although many doctors don't agree with this, there is thought that many Hashi sufferers with gut issues can have high readings with only a limited amount for active use. A Vit B12 test measures the total amount in blood circulation and this includes the inactive form of Vit B12 (holohaptocorrin) as well as the active form (holotranscobalamin) that is usable at cell level.
I supplement methylcobalamin Vit B12 which is the pre-methylated form, meaning it's ready for your biochemistry to put to immediate use.
Your Vit D is under half way through range so probably too low & needs supplementing with a little K2 that directs the uptake of calcium born from the Vit D, straight to your bones.
I supplement plenty of Vit C for adrenal support ... 3000 - 5000 mg a day.
Thyroid antibodies may reduce when thyroid hormones become optimal. Also supplementing selenium can help encourage lower levels.
And... Radd or anyone else who may be reading this, are these levels optimum, and if not, what are the optimum levels?
Vitamin B12 is 477 (135-650)
Vitamin D in April this year was 82 (51-140
Radd, my Hashimoto’s antibodies are sky-high and have been since first measured 18 months ago; they are >1,000 and > 3,000. My cortisol was measured with the 24 hour urine test twice about 18 months ago. The first test was at the lowest end of normal; and the second one was within normal range but still very low. I would like to think my adrenals somewhat recovered through 13 months of total convalescence. I could barely move and slept and rested and slept. Any further feedback and thoughts welcome. Fxx
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?!) Any thoughts on that?
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