Thyroid, anemia, cortisol and fake menopause - iron IV on Monday

[Incoguto]

Hey everyone,I have been struggling recently with a lot of symptoms, mainly crushing fatigue to the point of dizziness and blurry vision.

After years of trying different meds, it is now clear I don't tolerate meds because of other factors.

I clearly need higher dose of thyroid meds, but they don't work at a cellular level.

Currently I take 90 T4 and 24 T3 in Armour and synth T3.

I am on prescribed iron shots 80 mg a day, but I don't absorb then hence having Monover iron infusion with my hematologist on Monday.

Iron 39 (50-170), ferritin 37 (range up to 200).

On top of it my salivary cortisol came back. I did 5 point saliva at it looks like this in % of range:

Morning 7%

Mid-morning 48%

Early afternoon 9%

Late afternoon 65%

Evening 59%

My estrogen is below range 12 (21-288).

My hematologist is convinced I'm just really hypo, my cardiologist thinks the same. And I am definitely hypo, still have some pounds to shed, my hair is so dry and brittle it tangles easily could sleep a lot etc.

This is just a rant...I have nothing else to add, I'm just tired of feeling this way.

Next step is iron IV, then seeing what the result is, trying hydrocortisone for low cortisol.

[greygoose]

I clearly need higher dose of thyroid meds, but they don't work at a cellular level.

What do you mean by 'don't work'? You can't convert well, or you can't absorb it at a cellular level?

What are your other nutrients like? Vit D, vit B12 and folate?

How did you get on with the ACTH test? Is your HC prescribed or are you self-treating with it?

[Incoguto in reply to greygoose]

Both. Can't convert very well (been on Levo, levo plus t3, ndt, ndt plus t4, ndt plus t3 now) and don't absorb at cellular level since I have hypo symptoms with high ft3 (ft3 jumps from midrange to 76% of range by adding only 1.25 mcg, it is insane). Vit D is slightly over range, so is B12, folate is 17.6 (range 3-20).

ACTH is low in range, morning lood cortisol over midrange (so didn't qualify for acth stimulation), aldosterone double the range, SHBG is under midrange. Sodium low in range, potassium normal.

I will self-treat HC as no doctor wants to do anything about it since my blood cortisol is over midrange, even though saliva is low.

I can't work I'm so fatigued, could fall asleep anywhere.

I used to take 4 grains of Armour and stopped tolerating it one day. Lowering to less than I'm on now (on 2.375 grains plus 2.5 t3) causes me to sleep most of the day and putting on weight a lot.

[greygoose in reply to Incoguto]

People who have trouble absorbing at a cellular level usually need their FT3 over the top of the range to saturate the receptors. If yours never gets higher than 75% through the range perhaps you need to take even more T3. You're not on a particularly high dose for someone who doesn't convert well.

[Incoguto in reply to greygoose]

I tried to take more t3 and I end up with tachycardia, sweats, anxiety, insomnia etc. While I used to be able to take more. I think it's either cortisol or iron that causes this intolerance (maybe not lack of absorption). I definitely need more t3. I think it is weird that ft3 goes up by 26% of range by adding only 1.25 mcgof t3. Something seems wrong.

[greygoose]

These things are unpredictable. You cannot work it out mathmatically.

[Incoguto in reply to greygoose]

Absolutely. Just at this point taking more or less produces bad effects, so I'm looking into iron IV as my hair is shedding a lot, I am very pale etc. Have you ever tried taking hydrocortisone Grey? I have some to do a trial.

[greygoose in reply to Incoguto]

I took it for a couple of years, yes. Prescribed by a doctor for adrenal fatigue - something that most doctors refuse to recognise. But this doctor had it himself, so saw it in me.

Unless you have adrenal insuficiency, you have to be very careful how you take it, if you want to be able to come off it one day. Never take it after 1 pm.

[Incoguto in reply to greygoose]

Thanks! Did it help? I don't think it's insufficiency, but a vicious cycle of low thyroid causing low cortisol causing intolerance to thyroid meds plus low iron makes it unable for thyroid meds to work effectively and as a result, estrogen going down due to hypo. I have been in this mess for 6 yrs, before I tolerated all meds and was able to take a lot and increase by more. Lived a normal life.

[Idana in reply to Incoguto]

How did you come out of that vicious cycle, and recover?

Thank you

[greygoose in reply to Incoguto]

No, it's probably not insufficiency, but adrenal fatigue. When your thyroid isn't working correctly, the adrenals step up and take up the slack by producing more cortisol. But, they cannot do that indefinitely. And cortisol production gets more and more difficult. However, it very often picks up when your FT3 is optimal. Til then, if cortisol is very low, but no Addison's, it helps to take HC in the mornings - and only in the mornings - to give the adreanals a helping hand at their busiest time.

It helped me enormously, yes.

[Incoguto in reply to greygoose]

Thank you Grey! Do you recall if you were taking 10mcg of hydro? Hoping this would be enough for me

[greygoose in reply to Incoguto]

I honestly can't remember the dose, but it would depend on your level of cortisol.

[Incoguto in reply to greygoose]

No worries, thank you!

[greygoose in reply to Incoguto]

You're welcome.

[Incoguto in reply to greygoose]

Forgot to ask...would 7% of range in the morning for salivary be considered quite low? My blood serum cortisol was over midrange in the morning. Also, my 1:30 pm sample was 9% of range. Thank you

[greygoose in reply to Incoguto]

First thing in the morning it should be nearer the top of the range. Yes, 7% is very low!

[Incoguto in reply to greygoose]

I remember having it at 66% years ago when started NDT, felt completely normal.

[greygoose in reply to Incoguto]

How much NDT were you taking then?

[Incoguto in reply to greygoose]

Only 0.5 grain lol it was just the start of dosing.

[greygoose in reply to Incoguto]

Ah, well, things have obviously changed since then. But, see what the HC does for you. It might be the missing link.

[Incoguto in reply to greygoose]

Absolutely, also still had my own thyroid output, while now my TSH is stuck at zero.I want to try for sure 😀 first iron IV, then hydrocortisone, then estrogen and prog from my gyno..

[greygoose in reply to Incoguto]

Good luck! Keep us updated.

[Incoguto in reply to greygoose]

Will do! Both excited and terrified about it 😀

[greygoose in reply to Incoguto]

I know the feeling!

[Incoguto in reply to greygoose]

😀 I'm not alone then!

[greygoose in reply to Incoguto]

Oh no, far from it!

[Incoguto in reply to greygoose]

Just done with my iron infusion. Experienced the anaphylactic shock (couldn't breathe a minute or two in), but the nurse was prompt with the hydrocortisone injection and we were able to finish the infusion 😀 next one in 3-6 months.I have also got my ft3 and ft4 results today and they are low.

Ft4 = 21% 0.87 (0.7-1.48)

Ft3 = 53% 2.82 (forgot the range!)

Blood serum cortisol at 8:30 am was 93% of range 18.4 (3.7-19.4).

[greygoose in reply to Incoguto]

I have no experience of iron infusions. Doesn't sound very nice. Are you feeling better now?

Blood serum cortisol is good.

But FT4 is very low. That doesn't always matter, though. Not everybody needs it high. However, the FT3 could be higher and could explain your symptoms. Plenty of room for an increase in dose.

[Incoguto in reply to greygoose]

I know, me neither! Lol

Feeling better, thanks, just very tired, so will take it easy tonight. A lady after me had the same reaction! The nurse said the effects of iron will kick in tomorrow already.

Yeah blood serum quite good, while saliva low. I would be bit hesitant taking hydro with such high blood cortisol. But maybe it's the saliva that matters more!

Yeah I reduced Armour since I thought t4 was giving me symptoms and certainly it did some, but I'm definitely quite hypo. Maybe I'd increase t3 a little this week?

[greygoose in reply to Incoguto]

I don't think either are 100% reliable. I don't know. I've only ever had the serum test because you can't get the saliva test in France. Were both these test fairly recent?

Yes, if I were you, I'd increase the T3 by 5 mcg, now.

[Incoguto in reply to greygoose]

Got it, yeah, my saliva was done a month ago, back then blood serum was 16 in the range to 19, a now it is 18.Yeah good idea! I'll just wait for effects of the infusion maybe, in case it increase my ft4 ft3!

[humanbean]

Regarding your iron problem...

 helvella has a document on iron that might be helpful to you. There are three different routes for the body to absorb iron and it depends on the supplement(s) chosen how the body tries to absorb it. The various iron supplements that doctors usually prescribe are known as iron salts. Lots of people struggle to absorb iron in that form.

There is also ferritin and haem (or heme). And you can mix and match these different types of iron supplements because the various methods of iron absorption don't interfere with each other.

helvella.blogspot.com/p/hel...

In my own case it took me nearly two years to absorb enough ferrous fumarate 210mg (a standard iron salt) at maximum dose (one tablet three times a day) to raise my ferritin to mid-range. I then started taking a maintenance dose, and for my serum iron to start rising took another five years. I now test an iron panel a couple of times a year to make sure that nothing iron-related is dropping like a stone or rising like a rocket.

If I had my time over again I would use iron infusions too, rather than take as long as I did to get some control over my iron and ferritin.

Good luck with the iron infusion.

[humanbean]

My hematologist is convinced I'm just really hypo, my cardiologist thinks the same.

Have these doctors considered treating you for myxedema coma? If you don't have it yet you sound damn close.

It would involve IV infusion of T3 and/or T4. There would obviously be other treatment involved too, for other symptoms of the condition.

en.wikipedia.org/wiki/Myxed...

ncbi.nlm.nih.gov/books/NBK2...

ncbi.nlm.nih.gov/books/NBK5...

Just because myxedema coma refers to coma the patient isn't necessarily in a coma in the traditional understanding of the word. These days the condition is sometimes referred to as "myxedema crisis".

[Incoguto in reply to humanbean]

Thank you, I don't seem to have myxedema coma. My body temperature isn't low, my sugars aren't low, my blood pressure doesn't seem low. My tsh is suppressed, while ft4 below midrange, ft3 is between mid to high in range.Iron infusions are the way to go for me now, I wasn't prescribed iron salts, it was Feroplex, Sorbifer. My hemoglobin, rbc, hematocrit are great, high in range, but iron is below range, ferritin low in range.

[humanbean in reply to Incoguto]

Okay, so things aren't as bad as I thought. I hope you manage to find a way of raising your iron and ferritin. One thing that is important is that, if or when you need more B12 and folate, many of us do well on methylcobalamin and methylfolate. And, particularly the methylfolate, can actually help with raising iron in some people. Avoid folic acid.

ncbi.nlm.nih.gov/pmc/articl...

...

Actually, the fact that your body temperature isn't low is quite unusual in someone with hypothyroidism.

[Incoguto in reply to humanbean]

Thanks! I hope this infusion helps, he wants me to get it every 3 months with monitoring levels.Perfect, I take both methylated forms, because I feel best on them.

Yeah I think potentially my temps were low years ago when diagnosed, but now I feel okay. However, when my ft3 was midrange 2 weeks ago I was cold and was taking baths. I don't have a thermometer right now.

I'm 39, I don't work right now, but I spend a few hours outside the house a day, walking groceries etc. Around afternoon I have a nap, it cuts me off.

[deniseross]

Hi, interesting post…I relate to some of your issues. I’m curious why not focus on raising estradiol some? It’s been immensely helpful for me in many ways. But I have/had perimenopausal symptoms on top of the thyroid/adrenal/iron issues. Sorry if you have mentioned this elsewhere.

[Incoguto in reply to deniseross]

Thank you, I have prescription for estrogen and prog from my gyno, but my hematologist suggested to wait, he thinks in hypo and once corrected, estrogen will go up...still not sure 100% whats what. May I ask at what age you started HRT and what symptoms did it relieve? There is so much crossover! I'm 39, have regular periods

[deniseross in reply to Incoguto]

I started HRT at age 49 or 50. I wonder since you are only 39 if your estradiol was tested on day 12-14 or day 19-21 of your cycle. It’s pretty important to test then since those are the times when estradiol is actually higher. It has definitely helped with some of the night sweats, anxiety, sleep issues, arthritis symptoms, Pulsatile tinnitus, and palpitations. I’ve also worked on raising my ferritin, which turned out to be really low. I’ve also had cortisol issues as well so sometimes I’m not quite sure which change fixed which symptoms. But I’m pretty sure estradiol has been a big help.

[Incoguto in reply to deniseross]

It was tested on day 4 of cycle each time. I was also told I have no ovulation, my prolactin is just over top range.I'm having my first iron infusion tomorrow, hopefully it will shed some light!

Something is draining my iron, estrogen, sodium and cortisol. I bet it is all thyroid, but with trouble raising it, I feel snookered.

My LSH FH are good, my ultrasound showed that I have enough estrogen since the lining on my uterus is thick..but in blood is lowish

[deniseross in reply to Incoguto]

Day 4 of your cycle your estradiol is expected to be low. See if you can get a test on day 14 or 21. I’d wager it’s much higher. Your lining would thicken due to lack of progesterone, which is very typical at your age and not ovulating would result in. That is best to test on day 21. I know, hard to focus on more than a few things at a time. Thyroid first. They are definitely all interrelated and thyroid is at the top of the priority list.

[Incoguto in reply to deniseross]

Thank you so much! When should I test estrogen since my cycle is 24-25 days? My progesterone on day 21 was 0.29 (range up to 0.30).

Absolutely, it is all so connected, but I still can't figure out why I can't tolerate thyroid dose, while I really need it.

[deniseross]

l’d do day 11 or 12 for Estradiol and day 18 or 19 for progesterone or both. If you look at a graph of the hormones during a cycle, you can see that estradiol is going up for several days during two intervals. Even if you don’t test at the absolute highest point, at least you’ll be catching it at a point where it’s somewhat relevant

Cycle

[deniseross in reply to deniseross]

…and then there’s testosterone…I’ve known women who credit testosterone supplementation with curing their fatigue. I haven’t done it yet, been trying to get everything else high enough first and mine isn’t super low yet. Always another thing to consider. I hope the iron helps you, I had very low ferritin for a while and raising it a little has been good but I need more too.

It’s such a shame that this takes so much energy and wherewithal to figure out and that is exactly what many of us are short on in this state. It’s tough. You sound like you’re real wise about it, though. I have faith that if we keep plugging away, it’ll get sorted. Hugs.

[Incoguto in reply to deniseross]

That's the one I checked, my free testosterone is just slightly over midrange.How is your tiredness fatigue at the moment?

Just back home after my iron infusion. It was a bit of an adventure. Had the anaphylactic shock couple for minutes in, but it was mitigated by a strong injection with steroids and we were able to finish the IV. The nurse said I'll be tired today, but tomorrow I should already get some better energy as this iron works fast. Next infusion in 3-6 months depending on results.

It does, we say, you have to be in a good health to get your health in order...it is not easy, but I'll get there, we will get there.

Thank you, I've been at it for 6 years and only know some things start to makes sense!

Hope dies last!

[Incoguto in reply to deniseross]

Thank you so much! I was always told by doctors to test day 3-5, but it makes sense to me what you're saying! I will test it as per your advice in my next cycle!