So tired and at a loss

[Spangle15]

Hi

I really don’t know what to do now. After 20 years doing pretty well on thyroxine following thyroidectomy at aged 21, I saw an endo about hyperparathyroidism (leading to removal of 2 rumours), he said that lots of my symptoms were probably due to my thyroid and not the hyper parathyroidism. And suggested trying NDT. That was about 3 years ago and since then I just haven’t felt well. We have tried all sorts: Armour, ERFA, ERFA plus thyroxine and now thyroxine plus synthetic T3.

During the past three years I’m pretty certain I feel worse than before I saw the endo and he suggested trying something other than thyroxine. At the moment I feel like a walking zombie, groggy all the time, irritable, very tired, and I’m struggling to get through the day. I just don’t know what to do next.

Can anyone make any suggestions?

[humanbean]

Were you taking Levo before you started NDT?

What dose of Levo were you on and what dose of NDT were you put on after the change from one to the other? And what dose of thyroid hormones are you on now?

I would suspect two things...

Either you are under-medicated, or you have a nutrient deficiency or both.

[Spangle15 in reply to humanbean]

Hi Humanbean

I was on about 116 mcg of thyroxine daily (2 days at 125, day 3 at 100). I think I was put on 1 grain plus 2 halves if I remember rightly of NDT.

Currently taking 100 mcg thyroxine and approx 7.5 mcg T3.

My last bloods just prior to lockdown were T3 - 7.8 (range 6.8) (T3 was dropped from 10mcg to the 7.5 I’m now on because too high)

T4 - 18.8 (range 12-22

TSH - 0.03

[pennyannie]

Hello Spangle

Having just looked back at your previous post, what have you done about your very low ferritin level, as I understand you hesitating to supplement?

[Spangle15 in reply to pennyannie]

Hi. I haven’t done anything. I still don’t know what to do for the best.

[pennyannie in reply to Spangle15]

I don't know enough about iron, all I know is I need my ferritin at around 90 for good conversion of T4 into T3. You're on Levothyroxine and this needs to be converted to T3 as that is the thyroid hormone the body runs on.

Mine was at 23 and I felt so ill - though unable to get an infusion, as considered ok and good to go as ' in range ' ,

I supplemented with Solgar Gentle Iron, plus eating liver weekly and also took the Spatone liquid iron and it took over a year to get this level up to around the 70's.

I still supplement daily, eating a spoonful of whizzed down chickens livers with a dollop of mayo, every morning.

P.S. I've just seen that you have Graves Disease, so you might like to take a look at the Elaine Moore Graves Disease Foundation website. Graves is an autoimmune disease, and as such, its for life. It's in your blood, your DNA. Elaine has Graves and went through RAI in the 1990's and found no help with her ongoing health issues, so, as a medical researcher started researching her own illness. She has written several books and now has this excellent website where there is also an open forum, much like this amazing website where you can ask questions of the community.

[Spangle15 in reply to pennyannie]

That’s interesting. We’re your actual iron levels ok? Can you remember what they were? Because my iron is ok, it’s just the ferritin that’s so low.

Can I ask what your symptoms were when you were at 23 because that’s more or less the same level as me.

I don’t eat meat and haven’t find for 30 years so it makes it a bit harder I guess from diet.

Thank you for replying.

[pennyannie in reply to Spangle15]

You might be eating iron rich foods but obviously liver and red meat are the quickest and easiest routes, through food, to build up ferritin levels.

If you are not metabolising and breaking down the nutrients in your food you will be low in vitamins and minerals, and this will pull you down even further and no thyroid hormone replacement will be working or supporting you. It's not a question of upping a dose of this or that, you need your vitamins and minerals optimal for any thyroid hormone to work well.

I was also living with the consequences of drinking RAI and there are details on my profile page, I don't want to write and remember all this again, right now.

[Spangle15 in reply to pennyannie]

Thank you for replying. I just spotted your PS above too. I’ll take a look at that site.

[Spangle15]

No I don’t, but it doesn’t matter how tired I feel, I’ve never been able to sleep during the day. I also sleep badly at night despite feeling exhausted.