Ferritin and Thyroid

[lcsnow21]

If my hypothyroidism is subclinical and my ferritin is still too low, could increasing my ferritin help to keep me from having to take thyroid meds? I struggle with heavy cycles and haven't been able to get my ferritin above about 35 yet. I'm wondering if my fatigue is more iron related than thyroid related. I have no antibodies and when I take thyroid meds I just have so many nasty side effects. NDT makes me go manic and T4 only makes me feel dead. I would love to stay off the pharmaceutical drugs if I can figure out how.

[greygoose]

NDT and T4 are not pharmaceutical drugs. They are hormones. T4 is synthetic, true, but and exact copy of the real thing. And NDT is made from pig thyroid.

It is very doubtful that raising your ferritin will eliminate the need for thyroid hormone replacement, but it might make it easier for you to tolerate. Have you had your vit D, vit B12 and folate tested? Because they are probably low, too.

[lcsnow21 in reply to greygoose]

Yes they were all low about a year ago but I've been working on increasing everything. The only one I struggle to keep high enough is the iron due to my monthly loss.

[greygoose in reply to lcsnow21]

Have you tried eating liver once a week?

[lcsnow21 in reply to greygoose]

No but I have started taking dessicated liver pills this month!

[greygoose in reply to lcsnow21]

OK, that should be good. Be interested to see how you get on with them.

[lcsnow21 in reply to greygoose]

My TSH has never been above 3 and when I started taking meds it shot up to 3.9. I guess I'm just wondering what I'm doing o myself and want to make sure the meds are completely necessary! I haven't been able to get pregnant for 2 years which is why I decided to take medication. Otherwise I may not have.

[greygoose in reply to lcsnow21]

Well, I doubt you're doing anything much to yourself, but you really need full labs done : TSH, FT4, FT3 and antibodies, to get the full picture.

What are you taking, and how much?

[lcsnow21 in reply to greygoose]

The first doc I went to is integrative and they don't like to give T4. She gave me NDT twice. The first time was 2 years ago and I started on 1/4 grain everyday. At that time my T3 was just under halfway in the range. I started feeling like I was going to have a heart attack and was extremely hyper so I stopped taking it immediately. I just worked on all my nutrition and took ashwaghanda and things got a little better but I wasn't great about taking the iron due to constipation at that time. My thyroid numbers got a tiny bit better but when I started trying to get pregnant I got off the ashwaghanda because I was concerned with it's safety. Everything slowly got a little worse. So I tried taking iodine, zinc, selenium, and tyrosine. Numbers got slightly worse. I have also been under stress because of the infertility. I had investigative laparoscopic surgery to look for infertility causes and after that I felt even worse and my numbers weren't great so the doc tried NDT again (WP thyroid). I started with a half of a 1/4 grain every other day and was doing fairly well but she told me to work up to a 1/4 grain daily. When I got to taking a half of a 1/4 grain daily I started having massive anxiety and felt like I had 10 cups of coffee. I wanted to run for miles to burn off the energy. So I emailed the doc and she told me to get labs done to see if I had gone hyper. My TSH was the highest it has ever been in my life and the free Ts were a little lower??? I thought this was very strange and so I asked to be referred to an endocrinologist. The Endo basically said my levels need to be optimal if I'm having trouble to concieve. So he gave me some Synthroid brand samples and a prescription. I started them the next day and stopped the NDT. I was pretty much bedridden. So exhausted like I've never been in my life. I read you should stay on the same brand and when I filled my prescription it was for generic levothyroxine so I started taking that. I felt ok but I would have good days and bad days. So I thought maybe I should go back to the name brand and if it works better I'll request it and pay extra for it.. I live in the US. So as soon as I started on the Synthroid I was again not able to do anything. So exhausted. The T4 is 25mcg. So I emailed the new doc after a month of this and he said "This is not really expected. Ok to get off all meds but remember I gave you the prescription to help with conception. Go ahead and get labs and we will visit." So I went to get my labs 2 days ago and am awaiting a response. Meanwhile I'm a little better on the Levo but still tired and foggy. Part of me wants to throw all the meds in the trash because they've made me worse off than before but I don't want to give up. I'm just lost and confused. Sorry for the loooooong story!!

[greygoose in reply to lcsnow21]

Well, NDT doesn't suit everyone. Some people do better on synthetic. But, if you felt better on the generic, why didn't you go back to taking that? It could be the fillers upsetting you, and they vary from brand to brand. On 25 mcg it's not surprising you had good days and bad days, it's far too low a dose. He should have started you on 50 mcg.

Are you still taking the iodine? That really is the wrong thing to take - especially if you hadn't been tested for deficiency. And, if taking iron, you should take vit C to help with the constipation and absorption. If the constipation is really bad, you could take magnesium citrate, as well.

So, do you have any idea what your nutritional levels are now? And, are you still supplementing anything other than iron?

[lcsnow21 in reply to greygoose]

Ugh I thought so about the iron and I asked her to test for it and was ignored. The endocrinologist also said DO NOT take iodine. I don't have my labs in front of me but my D is in the 40's now, B12 is close to 600, but ferritin was only 25 last time I checked. I am doing the vitamin C with the iron. I have so much to keep up with haha

I've always been a health nut and am sad I have to take thyroid meds. I thought maybe the Synthroid was "cleaner" than generic so I would rather take that but for some reason my body doesn't like it. I guess he gave me the low dose because I was so sensitive to the NDT maybe? He told me it might make me feel a little wound up at first and it most certainly didn't! Only made me tired. I felt like it was shutting my thyroid off completely.

[lcsnow21 in reply to lcsnow21]

I meant iodine not iron

[greygoose in reply to lcsnow21]

Your D is a bit low, then. But B12 should be ok.

How much vit C do you take?

It's not a question of being 'cleaner', it's a question of the fillers. They all have different fillers and one might disagree with you whilst another won't.

That may have been his reasoning for the low dose of T4, but it doesn't really work like that. Giving too low a dose can totally back-fire!

[lcsnow21 in reply to greygoose]

I was taking 1500 of vitamin C and just ran out! So I might be under medicated then... Can the 25mcg make my thyroid stop working on it's own but isn't enough to make me feel well? That would make sense.

[greygoose in reply to lcsnow21]

That's exactly what can happen! You've hit the nail on the head.

1500 mg vit C? You can increase that, see if it helps.

[lcsnow21 in reply to greygoose]

Well that's what it feels like! Like my thyroid has been turned off. Crazy! I'll increase the Vit C, and keep building up everything else. Thank you so much! I'll keep taking the generic until I hear back from the doc and won't throw a fit and stop everything 😁

[greygoose in reply to lcsnow21]

That sounds like a very good plan.

[lcsnow21 in reply to greygoose]

greygoose may I ask your thoughts on this?

May 2017 - Functional doc keep harping on me about my thyroid but I had a bad experience with medication in the past so I didn't want to try again just yet. She tells me to take Iodine, Selenium, and Zinc.

TSH2.65 0.40-4.10 (UIU/ML)

FFREE T4 (THYROXINE)1.25 0.80-1.90 (NG/DL)

FFREE T32.6 2.4-4.2 (PG/ML)

THYROID PEROXIDASE AB2 <9 (IU/ML)

THYROGLOBULIN AB<1 <4 (IU/ML)

Aug 2017- I've taken what she asked except did not take the high dose of Iodine she suggested. I took a thyroid support supplement with a smaller amount. Labs are worse. She gives me WP Thyroid scrip and tells me to take HALF of a 1/4 grain every other day, then a half of a 1/4 grain everyday after a month, then move up to a whole 1/4 grain.

FTSH3.050 0.400-4.100 (UIU/ML)

FFREE T4 (THYROXINE)1.21 0.80-1.90 (NG/DL)

FFREE T32.5 2.2-4.2 (PG/ML)

Sept 2017- I've been ok on the NDT but worried about moving up the dosage because I'm a little wound up. I go get labs.

TSH2.720 0.400-4.100 (UIU/ML)

FFREE T4 (THYROXINE)1.19 0.80-1.90 (NG/DL)

FFREE T32.8 2.2-4.2 (PG/ML)

Oct 2017- The labs seemed ok so I start moving it up. I'm REALLY hyper, having a lot of anxiety, exercising really hard. One day I work out really hard and end up crashing and burning for 3 days. Dizzy, tired, worried about what's going on so I go back down to every other day dose. Go get labs.

FREE T32.6 2.2-4.2 (PG/ML)

FFREE T4 (THYROXINE)1.07 0.80-1.90 (NG/DL)

FTSH3.820 0.400-4.100 (UIU/ML)

Oct 2017- WHAT?! Why do my labs look like this if I feel like I'm hyper? So I ask for an Endo referral and get on the T4.

Now- T4 is making me feel like dead. The new Endo only checks TSH. He says T3 is only useful for Grave's disease.

2.240UIU/ML0.400-4.100F

Doc says to come in for an appointment because this is a "complicated situation". He doesn't want to move my dose up (25mcg) because I'm in the normal range.

Do you have any thoughts on this? Thank you so much!

[greygoose in reply to lcsnow21]

Well, I think it's really bad luck to have found two such ignorant doctors one after the other, like that.

The first one should never have started you on iodine without testing. In fact, he should have tested all your nutrients before starting you on NDT. And he should have started you on a higher dose Half a grain, would have been better, than messing around like that. He gave you just enough to shut down your thyroid but not enough to compensate for the lose of your natural hormone, which is why your TSH went up slightly.

The second one is an absolute dead-loss, has no idea how to treat thyroid, and should be consigned to the dustbin forthwith. You will never get well with him. Not even worth consideration.

But, why do you feel 'hyper'? Well, rest assured, you are not hyper, nor can you ever become hyper. Nor are you over-medicated. Your symptoms are hypo because you are using up your meagre amount of T3 by going to the gym. And, you are certainly not taking enough T3 to be able to sustain vigorous exercise like that. Just gentle walking or swimming until you manage to get onto a decent dose of NDT.

If you cannot raise your NDT, then you need to check your nutrients are all optimal : vit D, vit B12, folate and ferritin.

It is very difficult to find a doctor that knows anything about thyroid. But, if, at the first visit, it doesn't feel right, don't go back. Don't just blindly do what they say, like taking iodine. You're better of researching your disease, and self-treating, than consulting doctors like that.

[lcsnow21 in reply to greygoose]

Well. I'm beginning to think I've been over medicated and never needed any if this stuff all along and that my symptoms were from low iron, depression from not being able to concieve, and boredom from quitting my job. Ha!

[greygoose in reply to lcsnow21]

Yes, I think we all go through a period of denial. I certainly did, in 2013. I came off my T3, and stayed off for 6 months, then got tested. My TSH was 45, and my Frees well below range. Whereas, when I was first diagnosed, my TSH was 11 and my Frees in-range. So, then, there was no denying it: I needed thyroid hormone replacement.

But, of course, you could well be over-medicated. But, you're making the common mistake of trying to divide symptoms into strict Hypo/hyper divisions. And, it doesn't work like that. So very many of them cross over. As I learn more and more about this stuff, I find more and more symptoms which can be both hyper and hypo. Which really isn't surprising, when you think about it.

But, if you are convinced that you are over-medicated or mis-diagnosed, come off your thyroid hormone replacement for a while, and see what happens. Take that opportunity to work on your sub-optimal nutrients - because there's no mis-diagnosis there, and see how you feel when you're optimal.

One thing, I can guarantee, when you first come off them, you will feel soooooooooo good! You'll be convinced you never needed them in the first place. But, if you do need them, the symptoms will come creeping back. When they do, get tested and see what's going on. But, never be tempted to take things like iodine, or these so-called thyroid support snake-oil things. They will just make the manufacturers rich, and you worse.

[lcsnow21 in reply to greygoose]

Ok... Well I am going to another doctor on Monday. I am taking half a pill because I had a very tight chest feeling and anxiety last night. I'm still exhausted and now having nausea and diarrhea and no appetite. Worried I'm overdosed 😞

[greygoose in reply to lcsnow21]

I very much doubt that you are. Certainly not enough to cause those symptoms. Sounds like you've got some sort of bug.

[judburke]

I think you need to ask a Dr WHY your ferritin and vitamins are so low. You might have a gut absorption issue such as Coeliac. Please ask why

[lcsnow21 in reply to judburke]

The ferritin is menstrual loss. I have no GI symptoms and all levels go up easily with supplements so they never want to test me for Celiac 🤷