First labs on NDT and I'm confused and dismayed. Some symptoms better. Some worse.

[GarryB]

I have been on EFRA Thyroid since July 12, 2017. I started on 60mg and have been on 120mg for a month (I tried to raise as per STTM website). My complaints are fatigue, muscle aches and soreness. Thankfully brain fog no longer seems to be a problem; I can at least think.

These days I experience a cool flushed feeling in my forehead. It's not warm and my face doesn't get red. It seems to come and go during the day. I am also noticing my head sweats a little when I wake up which isn’t normal for me. I have lost some weight in the last month but am not skinny.

My labs on July 11, 2017 while taking 100mcg Synthroid before starting the NDT were:

TSH 0.17

FT4 20.5 (9-23)

FT3 3.8 (3.5-6.5)

My labs on September 6, 2017 while taking 120mg EFRA Thyroid were:

TSH <0.03

FT4 16.8 (9-23)

FT3 4.3 (3.5-6.5)

I am pleased my FT3 has increased a little and I guess that is due to the T3 from the NDT; But I think it should be a bit higher? I suspect my improve muscle aches are due to the FT3. I want them gone.

My FT4 has dropped and is nothing great?

BUT my TSH is very suppressed. The TSH tells me I'm over-medicated? And the flushed feeling tells me the same?

What do I do next? Most of my symptoms are hypo (trouble sleeping, tiredness and fatigue, joint and muscle pain) rather than hyper.

I will see Dr. on September 12 to re-evaluate. Till then I plan to reduce my EFRA NDT to 60mg.

I am trying to boost my ferritin after finding out only one month ago it was 21 (12-300 for men). I know this can have a big effect on thyroid.

THANK YOU for reading!

[greygoose]

A low TSH does not automatically mean you are over-medicated. In fact, once you are on thyroid hormone replacement - especially with T3 - the TSH is irrelevant unless it goes high. It doesn't matter how low it goes. It doesn't matter if it is suppressed. The most important number is the FT3, and yours is low. Your symptoms are probably due to under-medication. When you are taking T3, your FT4 is bound to be low, and it doesn't matter. The body only hangs on to what it wants, and it doesn't want as much.

So, rather than reducing your dose, I would increase it, if I were you.

[GarryB in reply to greygoose]

Thank you! I understand and your explanation makes sense.

What about my flushed feeling in the forehead? What could that be? I don't have any sweating on my head at 5pm - that only happens in the morning in bed; and not every day.

Could I drop back to 60mg till I see Dr. next week to observe my energy, aches and the flushing? I haven't taken the second 60mg today and the flushing is barely noticeable but I am sure this is too soon to have an effect.

I need to look for any scholarly articles about the hormone levels so I can show my Dr.

Thank you again!

[greygoose in reply to GarryB]

I'm afraid I can't make any comment about the forehead problem. I can't even imagine what a cool flush feels like. But, it could possible be low vit D, or something. Have you had your nutrients tested - vit D, vit B12, folate and ferritin?

[GarryB in reply to greygoose]

I did a finger-poke vitamin D blood test three months ago and the results were 54 ng/ml (40-60). B12 was 358 on 2017.04.08 so I began taking 5,000 mcg daily since my Dr. said it's difficult to take too much. I don't know my folate but my new multi-vitamin has 400 mcg. My ferritin was 21 on 2017.04.08 but I only learned that one month ago; I'm taking iron to try to raise it. I think my ferritin was/is a big part of my problem.

[greygoose in reply to GarryB]

So, they're all too low. But, a multi-vitamin won't do you much good. Total waste of time and money. Best to supplement things individually.

[GarryB in reply to greygoose]

I am taking a MV for a broad spectrum but individually for Vitamin D (5,000 IU/day), Vitamin B12 (5,000 mcg/day), iron (50-75 mg daily). My new multi-vitamin has 400 mcg folate; is that too little? The rest should be good except the iron maybe?

[greygoose in reply to GarryB]

Is the folate methylfolate? 400 mcg is good. But, it depends what else is in your MV. Does it contain iodine or calcium? If so, you don't want that. Does it contain iron? If so, you won't even be able to absorb anything else because the iron will block it. It's really not a good idea to take a bunch of stuff in one pill like that. Some things need to be taken separately. There's never enough of anything to treat a real deficiency, and the ingredients are very often the cheapest, least absorbable. Etc. Etc. Etc. MVs really are a bad idea.

[GarryB in reply to greygoose]

"Oh barnacles!" (Sponge Bob) The MV does contain iodine, iron and calcium. I thought I was killing lots of birds with one stone. So it's been a bad idea to buy this MV. But, isn't iodine a good thing for thyroid support? Doesn't the thyroid need iodine to function?

Could you comment which of these is a good methylfolate?

amazon.ca/s/ref=nb_sb_ss_c_...

What's an overdose level to stay under?

[greygoose in reply to GarryB]

The thyroid needs iodine to make thyroid hormone. I suppose you could translate that as 'the thyroid needs iodine to function'. But, it doesn't support, it stimulates, and stimulating a sick gland just burns it out faster.

All three of the top line are good brands, I've used them all. But, if I were you, I would go for a B complex, rather than just folate. The Bs all work together and need to be kept balanced.

[GarryB in reply to greygoose]

I have been taking a B Complex but used up the first bottle and am about to start the second different brand.

The new one has 1mg folic acid. I read somewhere folic acid had some safety concerns and you really want to be taking folate?

amazon.ca/gp/product/B00B4I...

[greygoose in reply to GarryB]

Methylfolate, yes. And, 1 mg is a very small dose if you have low folate. However, there are B complexes that contain 400 mcg methylfolate - sorry, I can't remember any names, at the moment - and that would be much better.

[GarryB in reply to greygoose]

Sorry I'm a little confused. 1 mg = 1,000 mcg. Is 1,000 mcg methylfolate too little? Thanks.

[greygoose in reply to GarryB]

PS I'm a Sponge Bob fan, too.

[Hidden]

Hi Your FT3 is low it takes times to find the right dosage of NDT.

My TSH is only 0.008 now i.e. suppressed. I can't help with the forehead problem but

try increasing your NDT maybe!

[GarryB in reply to Hidden]

Thank you. I'm gathering comments like yours stating TSH is OK to be very low or suppressed on NDT so I can show my Dr. It should be easy to show from my FT4 and FT3 that those hormones not in danger of being too high. I hope she will raise me. I will work hard on my vitamins in the meantime.

[Hidden in reply to GarryB]

It's very frustrating I know but hang on in there.

[humanbean]

My ferritin was 21 on 2017.04.08 but I only learned that one month ago; I'm taking iron to try to raise it.

What supplement are you taking? What strength and what dose?

[GarryB in reply to humanbean]

I am taking Solgar Gentle Iron 25mg. I am taking 2x3 pills a day for 50-75mg. I just started taking Vitamin C with it. I'd like to take less than 1,000 mg of Vitamin C to be sure I don't get diarrhea that is reported at higher levels. If I can figure out a timing schedule with my other meds I'd like to separate the iron doses.

[humanbean in reply to GarryB]

Just for comparison, when I had low iron and ferritin I was prescribed ferrous fumarate 210mg, 1 tablet 3 times a day. Since each tablet contained 69mg elemental (pure) iron, I was taking a total of 207 mg iron per day. I didn't absorb iron very well, and it took me nearly 2 years to get my ferritin up to mid-range. In order to get it that high in the end I had to go gluten-free.

If you don't get a good response from your gentle iron then you could try ferrous fumarate 210mg. It is available in boxes of 84 (enough for3 pills a day for 28 days) online or in pharmacies. Prescriptions aren't usually required - it is up to the pharmacist's discretion whether they agree to sell you prescription-strength iron pills without a prescription. I'm assuming you live in the UK, by the way. Boots can be awkward about selling the iron I took, but I had no difficulties getting it from the Tesco pharmacies and Lloyds Pharmacies.

Since iron is poisonous in overdose it is essential to keep tabs on iron and ferritin levels. The most convenient private test I've found at reasonable cost is this one :

medichecks.com/tests/iron-s...

[GarryB in reply to humanbean]

Last year my Dr. put me on FERAMax 150 (feramax.com/). It's a polysaccharide-Iron complex and 150 mg of elemental iron. It worked very well to bring up my hemoglobin but I could not continue due to the constipating effects.

Maybe I could try it again; this time easing into it.

I keep on reading gluten-free and desperately hope I don't eventually need that diet. It isn’t that I could not adjust to the change but rather that I am disabled and others cook for me. I really don't want to add that additional burden to my wife. I wish there was a simple test to be done to determine if one was gluten-intolerant. Then one could know for sure.

Actually I'm in Canada so don't have easy access to some of the things you do in the UK.

[GarryB in reply to GarryB]

I found the FeraMAX 150 and see my Dr. had me taking two pills a day. Maybe that was why I had difficulty. I'll try again with one a day. That should boost the levels much faster than the amount I'm taking now.

[humanbean in reply to GarryB]

To ease the constipation take 1000mg (or more) vitamin C with each dose of the iron. If you take high doses of vitamin C, spread them throughout the day.

Vitamin C in a high dose will cause diarrhoea in most people, so taking it with iron should help to prevent the constipation. You need to experiment with the dose of vitamin C to keep things moving comfortably.

The most basic form of vitamin C is ascorbic acid, but there are other forms.

lpi.oregonstate.edu/mic/vit...

lpi.oregonstate.edu/mic/vit...

Whatever you buy, buy it in the form of a powder. This is usually cheaper than tablets and you can tailor your dose to your needs more easily.

Since vitamin C is acidic it can damage teeth, so drink it through a straw, then rinse your mouth out thoroughly several times with plain water. Acidic foods and drinks soften tooth enamel, but it will harden up again after a while. Don't clean teeth until at least 30 minutes after taking your vitamin C.

[GarryB in reply to humanbean]

Thank you for this excellent advice! For me I want err on the constipation side so I will take slightly less Vitamin C to begin with. I read it helps iron absorption too. The FeraMAX directions say to take with food to lessen gastro effects but I know this lessens how much is absorbed. I'll start with the iron/vitamin combo.

[Hidden]

When on NDT, your FT4 levels are bound to be lower. I have found (I self-medicate with Thyroid-S from Thailand) that my FT4 levels are never higher than midrange when on an optimal dose of NDT (one where my FT3 levels are close to the upper normal limit).

As others have pointed out, the TSH is useless once on thyroid hormone replacement unless it goes too high. The TSH is not a thyroid hormone; it's a pituitary hormone and is only relevant to diagnose you as it will be elevated in hypothyroidism and suppressed in hyperthyroidism. Once diagnosed and on thyroid hormone replacement, you should go by FTs only if on T4 replacement only and mainly FT3 levels if on NDT.

If your FT4 levels are above midrange on NDT, there is an increased risk of rT3 dominance (excessT4 being converted to the inactive form of T3, reverse T3, rather than free T3 which is the truly active thyroid hormone).

T4 is there to be converted to FT3. When you take NDT, you are getting direct T3, meaning you need less T4 floating around in your system.

[GarryB in reply to Hidden]

Thank you. I'll be taking your response in it's entirety to my Dr. Tuesday!

[Hidden in reply to GarryB]

Best of luck!

[GarryB in reply to Hidden]

Thank you so much.

[researcherUK]

The flushing is normal, for some, when you start NDT as your body is adjusting.

You have not been long enough on 2 grains. It is best to wait a bit longer with this dose for another 4-6 weeks and retest. Meanwhile, you are aiming to boost your ferritin levels which will help in the long-term.

Try splitting the dose if you are not doing so and see how you feel.

[GarryB in reply to researcherUK]

Thank you! I'm glad to hear someone has heard of the flushing. It's very mild today. I'm taking your response as well to the Dr. Tuesday and I know she will have no problem waiting another 4-6 weeks.

I have split my dose as soon as I moved to 2 grains.

[researcherUK in reply to GarryB]

You are very welcome! I hope you will continue to improve.

[GarryB in reply to researcherUK]

I am so thankful to everyone who has answered and given advice. I have researched this issue on my own but the personal answers are invaluable. The communication age makes possible the reduction of so much human suffering. What a time to be alive.

[Phoenix605]

I am also a 'collector' try this link for size

discovery.dundee.ac.uk/port...

I dont understand the ratios bit but the conclusions seem clear enough. It is paranoia about cardiac effect and osteoporosis that gets GPs knickers in a twist when it comes to suppressed TSH.

I did read somewhere the sensible suggestion that they felt most patients who started with healthy hearts would prefer to have yearly cardiac monitoring and a calcium supplement to mitigate the risks if it meant they felt well by getting a decent dose of thyroid hormone, what is one more pill a day or test a year to your average thyroid patient - couldnt agree more!

[GarryB in reply to Phoenix605]

That was interesting. I suppose I'd rather live a shorter comfortable life than a long life of hypothyroid misery. Right now I feel like I'm dying anyway and even 25 more years living feeling like this seems worse than death. I'm starting to wonder if there isn’t something else seriously wrong with me and whether feeling this bad can be due to thyroid problems. But I read how badly others felt and how they described their suffering as hell so I guess this could be thyroid after all. I've been seeing my Dr. and have run quite a few tests and she hasn't found anything else. I'll be raising the issue with her again Tuesday.

[Phoenix605 in reply to GarryB]

Under medication is hell, there is at least one person on here who ended up bedridden for years with multiple diagnoses until they finally got correct hypo treatment, they may not be skipping about like a spring lamb but they have got resl wuslity of life back and lost some 'conditions'.

Your FT3 is no where near risk levels especially if you have a healthy heart to start with. Most people feel well when their FT3 is in the upper part if its range, I suffer if mine drops below 5.5 but we all have our own optimum. Get a pill cutter so you can fine tune with quarter grains if necessary.

[GarryB in reply to Phoenix605]

I'm 49 this month and haven't got heart issues I know of so hope that helps. I'm so eager to see if I feel better if I can get my FT3 up. I do have a pill cutter so am ready to split if needed.

[GarryB in reply to Phoenix605]

I re-read this and had to chuckle: "Get a pill cutter so you can fine tune with quarter grains if necessary." So far 2 grains of EFRA NDT has only raised my FT3 0.5 in two months above what it was on 100 mcg of Synthroid. I think I need a few buckets of pills! So far I'm a long way from the fine tuning stage. I hope I get there.