Hi everyone, I've updated my story and where I am.
Still struggling to move forward with severe fatigue episodes.
Was put on low dose steroids for suspected adrenal insufficiency a couple of months back. I thought at first they were helping, now I am not so sure. Am struggling really to know whether to continue with the steroids or wean off but that's for another day.......
Consultant mentioned that I was probably secondary hypothyroid but not on any treatment as yet.
Vitamin D is getting lower despite being on vit D spray which is frustrating.
Had a new round of labs done and am trying to figure out if I have iron deficiency.
A group on Facebook suggested that I needed a transfusion because my % saturation is less than 20% but I'm not convinced at all but I am struggling to read my total iron results in combination to see if I do have any iron deficiency or not. Can anyone read the results and tell me?
My ability to walk has continued to deteriorate unfortunately and I had a cruise to Spain last week and I could only manage a couple of Kms over 2 hours and then needed to sleep the rest of the day. To put this into perspective, in 2020 I was a fitness instructor who walked / ran 7 or 8kms a day then worked on my feet all day so it continues to be a huge decline.
Someone has suggested going to see a gastroenterologist if I am iron deficient to see why I'm not absorbing. I have had an endoscopy done which was clear last year but I have absolutely nose dived since my gallbladder removal last august. But my test results are similar to what they have been for years so I'm not convinced the gallbladder op is to blame.
Anyway results are below with the ref ranges (I remembered this time 😊😁).
If anyone could offer any thoughts, suggestions to take to my doctor's, I'd appreciate it.
I've also started with chronic left eye twitching again the past couple of weeks and get terrible restless legs most nights.
But the fatigue is the worst, it is severe. It did get better initially on the steroids but has now deteriorated again.
Thyroid
FREE T3 - 3.7 (3.1 - 6.8)
Free T4 - 16 (11-22)
TSH - 3.2 ( 0.27 - 4.2)
(It was 2.2 in January so going in the wrong direction again)
Endocrine
Cortisol - 354 ( 133 - 537)
FSH - 5.7
LH - 7.4
Potassium - 3.9 ( 3.5 - 5.3)
Sodium - 142 ( 133 - 146)
Iron
Haematocrit - 0.394 (0.36 - 0.47)
Haemoglobin - 129 ( 115 - 165)
MCH - 29.5 (27 - 32)
MCV - 90 (80- 100)
Platelets - 231 (150 - 450)
RBC - 4.37 ( 3.9 - 5.4)
% iron saturation - 19 (15 - 50)
Ferritin - 57 (30 - 150)
Iron - 13 (5.8 - 34.5)
Transferrin - 2.75 (2 - 3.6)
Other
Urea - 2.2 ( 2.5 - 7.8) always low and getting lower and I am concerned by the significance of this.
Vitamin D - 46 (more than 51)
Adjusted calcium - 2.32 (2.2 - 2.6)
Calcium - 2.24 (2.2 - 2.6)
Thanks 🙏
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Lucy___
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What Facebook group suggested an infusion, and did it just consideration saturation percent, or other measures of iron?
edit: your Ts are usual suspects for fatigue as well. What thyroid hormone replacement are you on, and how long had you been on the steady dose when those bloods were taken?
It was someone on the Iron protocol group who just said that all % saturations under 20 required a transfusion and I thought that couldn't possibly be correct so I said mine was 19 and questioned it and she said, yes a transfusion for less than 20 but she didn't ask for my other values. Hence why I wanted to check because as far as I can see, my iron levels are a little on the low side and I know my saturation is a little low but I couldn't see anything like crazy low that would warrant a transfusion.
I doubt I would ever have a transfusion anyway unless it was an absolute emergency because I have idiopathic hives and also a anaphylactic reaction many years ago and I am now terrified of allergic reactions to things I put in my body but I am starting to get a bit desperate looking for answers for this shocking fatigue that I'm looking at all any possible causes and solutions
I'm not on anything for the thyroid unfortunately. My endo wanted me stable with my cortisol before he will treat the thyroid. I'm on 7.5mgs hydro in the mornings and 5mgs afternoons and sometimes I feel like it helps with the shakiness I get but it doesn't really seem to be helping the fatigue. .I've noticed that my skin has gone extremely dry and flaky now and my hair is continuing to fall out.
There are days like today that I think I am actively dying because it feels like my body is shutting down on me. Even on the steroids.
Right! I didn’t remember the details but know you’ve been having a hard time.
At first glance, that low FT3 is definitely a prime suspect for at least some of your symptoms. But I’m not sure if evaluating is different for you since you’re not on exogenous thyroid hormones. I’ll defer to others here to weigh in on that.
But… re your iron.
Your instinct is correct. First, anyone who suggests iron supplementation (esp an infusion) without knowing your full story is not a credible source of advice.
To clarify, there is truth in what they said, as Transferrin Saturation % is absolutely an important number. It needs to be closer to 25-30% in order for your cells to effectively use what T3 you do have in your body. But mine was 20% at some point when I was on T3, and it’s not all or nothing. Yes, your iron panel points to your need to boost those numbers. But I’m out at the moment and will come back to add to my reply.
Others on this forum of course will have good experience to share. Keep in mind, Some people on this forum are very big fans of iron infusions. Others are more cautious (I am one of the more cautious ones.)
But can you tell me if you’ve ever taken iron supplements, and if you are a vegetarian. And can you tell me if you had a CRP test (this is a measure of inflammation that when high can increase ferritin.)
Thank you for trying to help me, I really appreciate it because I just feel like I'm getting worse and worse. Ive basically done nothing but sleep since Friday night because I just haven't had the energy to wake up except to go to the loo and eat. I have been away this week on a cruise and did vomit alot on Monday through drinking too much and I did updose my steroids for a couple of days afterwards. Perhaps I didn't updose long enough for my body to recover as I've felt grim since Friday morning.
I've taken iron supplements on and off throughout the years but I struggle alot with nausea so haven't been consistent with them.
I have been taking 4 sprays daily of the betteryou iron spray since January but it doesn't seem to have improved much I feel.
We do follow a mainly vegetarian diet and we eat meat substitute most of the time. I occasionally eat beef but that's the only meat and not very often.
I am concerned about malnutrition as I don't eat a huge amount and have had a mild eating disorder for many years. I am paranoid about putting weight on with the steroids so ensuring that I am eating enough is a concern. I am not losing weight though, if anything I am continuing to put it on despite not eating a huge amount.
My urea is always very low and that has made me concerned that that is a marker for malnutrition as I've read it can be an indicator of not enough protein in a diet. But I have never known my urea to be anything other than 2.2 / 2.3.
Is CRP reactive protein? My last CRP in January was less than 1 (ref range less than 5 I think). My CRP is traditionally low, I think it's been higher a couple of times over the past couple of years coinciding with infections, gallbladder issues etc......but under normal blood testing situations, it is traditionally less than 1 or less than 5.
As far as I'm aware I have fairly low markers for generalized inflammation which just adds to the puzzle because they were thinking autoimmune issues at one point like lupus but the tests turned out negative with very little inflammation indicated.
I should also add that I have very light periods in general now. They only last a day or two at most and are only a little bit heavy for a few hours maximum. They are regular though at 28 days
I'm not on anything for the thyroid unfortunately. My endo wanted me stable with my cortisol before he will treat the thyroid.
I’ll have some more input on iron, can at least share my experience and see if it’s helpful.
But…I too am wondering if others on the forum have opinions on whether you should still wait on treating your thyroid.
I am not sure, especially with the hydro and other things. I am just thinking out loud here. But have you thought after all this time if you should and when you might try to make the case for taking Levothyroxine/T4?
It's something I think alot about, starting thyroid treatment and actually at my NHS appointment the week before last the doctor suggested putting me on either T3 or T4 (I can't remember which or even if it was both) which really surprised me as I've heard that it's like hens teeth trying to get thyroid meds on the NHS. But I said that I was nervous about heart palpitations as I can get quite severe runs of bigimeny and trigimeny heart rhythms that put me in hospital and they often happen when I take meds that don't agree with me and I've heard that thyroid meds are really bad for increasing heart palpitations especially levo so I'm honestly really quite nervous.
In addition we still don't have a clear picture on my cortisol / AI. It is suspected but no firm diagnosis and I know that being on thyroid meds with unstable AI can cause a crisis which can be life threatening. I know my AI isnt outrageously bad given my blood tests but because we don't fully know what's happening with it, the dosage of the steroids is a bit hit and miss and I'm scared stuff that I'll start thyroid meds and it'll plunge me into a crisis. Perhaps I'm overthinking but my health over the last 10 months has made me very very frightened of everything, even just living and that mental fear I'm battling I think is just as debilitating as the physical issues.
I have become so frightened to live or do anything that stresses my body at all in case it brings on one of these "feel like I'm dying" episodes that doing anything, even starting new meds feels like a battle.
In addition they think I had a mini AI crisis a few weeks back when I woke feeling very sick and shaky and low BP and it resolved after taking high dose steroids while waiting for the ambulance. I was taken to hospital and they suspected mini crisis and told me to take steroids if it happens again and call an ambulance but I was home alone with my dogs and the ambulance didn't come for an hour and I felt very very frightened and vulnerable because I couldn't sit up without feeling faint and all this has left me so scared to do anything that could trigger my body.
So I do suspect that my thyroid is possibly the main reason for the fatigue with maybe additional features of the unstable cortisol, the low vit D and possibly some mild iron deficiency but the challenge is getting on the thyroid meds without triggering cortisol or heart issues and getting past my fear of everything which is so intense.
It doesn't help that my GP is less than supportive due to me putting in a complaint with the GMC about one of the partners.
I am going to go and buy some vitamin D and iron tablets tomorrow and just suck up the nausea.
I had been taking sprays of both but it looks like the sprays arnt really working for me.
It doesn't really help that I barely have anyone supportive round me. My ex husband who I share the dogs with is but he works alot. My partner lives in Manchester and can be supportive sometimes but dismissive other times and I'm still figuring him out. I find it hard to speak to him.
And I literally have no friends so no one that I can just ring and say I'm not feeling so good or need to talk this out. Or even someone just to sit and watch a movie with to take the anxiety down and my mind away from it.
Probably why I post on here alot and the Facebook groups, because I'm trying to figure this out basically by myself whilst mourning the life that I had and now I haven't a clue what's going on and it feels really lonely.
Maybe it's a mental battle as much as anything else
I am going to go and buy some vitamin D and iron tablets tomorrow and just suck up the nausea.
I had been taking sprays of both but it looks like the sprays arnt really working for me.
How many mgs of iron in the daily soray dose you’re taking. It’s possibly too little.
Have you read here about Three Arrows heme iron supplements? They are animal-sourced iron, which has many benefits over synthetic pills. I highly recommend them, as do many on this forum.
It doesn't really help that I barely have anyone supportive round me.
We get it. I will say that even with the people in my life… even the best of relationships… no one really understands it. That’s another reason why this forum is a life saver.
I was diagnosed in Aug 2022, after a life full of marathons/races, hard work, late nights, jet setting about…. 2 years later I look back and I’m completely shell shocked.
Hi FallingInReverse, just wanted to point out that non-haem iron supplements are not synthetic, it's just iron from plants rather than from animals. I expect you know this 😊 but wanted to make sure others realise that there are two types of iron - haem from animals and non-haem from plants. There are pro's and con's to both, and one type may suit some people more than others. One is not 'better' than the other, they are just different and neither are synthetic unless undesirable excipients are added but this can easily be avoided with careful selection.
But when it comes to non-heme supplements themselves, they are not from plants (as in the distinction between heme and non-heme iron sourced from food.) Ie, non heme iron supplements are mostly iron salts or chelated iron. Both require a chemical process.
Heme whether from food or when dehydrated in a capsule does not require any chemical process to alter.
Although not to imply they are necessarily inferior or not “natural” in the way people might prefer in their supplements. But neither are sourced from food, and they are chemically altered - independent of any excipients - so they can be absorbed and are stable.
Because Lucy called out past stomach upset with previous supplements - although chelated is better than salts, heme of course is actually natural and avoids stomach upset of both non heme (salts and chelated) types.
(Ps, always welcome and love the dialogue and as you noted I know you too know the ins and outs of iron prob better than anyone here, so yes, words matter and always good to clarify. I’m always open to all corrections or nuance, so lmk what you think!)
Thank you FIR, great explanation, and of course you are right...I forgot that non-haem (in supplements) has to be bound to something, good you pointed this out 😃 Clearly you are much more well informed than I am so stand corrected 😊
I've personally not taken haem iron but have got on very well with iron bisglycinate without any stomach upset and my ferritin levels have continued to rise steadily to 80. I did not do well with fumarate, after a couple of months it began to hurt. Hopefully Lucy will find one that works well for her 🤞
Urea is generally high in hypothyroidism as renal function slows. Yours could be low due to low protein if you have long term eating issues. Out of interest have you had creatinine or kidney GFR tested?
Your FT3 is far too low for good health and years of this eventually effects all working systems. Hence you feel like you are dying.
You need thyroid hormone replacement meds but to work best they require adequate cortisol (you are taking cortisol replacement meds) and iron (you are deficient!) Your body is squeezing every last drop (hence low T/S) but RBC’s and haemoglobin will eventually fall because your iron levels aren’t nearly high enough to maintain long term. Then you will be anaemic. What has your GP said about those iron levels?
Dr Peatfield always advocated to raise both cortisol and thyroid meds at the same time but you will need to supplement some iron, or otherwise risk heart palps. Also ensure to keep raising Vit D, Vit B12 and folate if they are low.
Have you had zinc tested? This is commonly low with years of hypo and again important for thyroid hormone synthesis. Also selenium.
You might find Dr P’s book ‘Your Thyroid And How To Keep It Healthy’ useful as talks about supplementing cortisol, its connection to thyroid hormones and all the essential co-factors.
Btw- gallbladder issues are common in long term hypo as well, as it slows gallbladder motility and bile flow. Have you got high cholesterol?
Hi Lucy___, I'm in the iron protocol group too, I would ignore the comment about the transfusion suggestion based on saturation - I'm pretty sure nowhere in the guides does it say it's a good idea to do that and I've read them multiple times!
Did you read all the guides? I know they are very long but essential to read though a few times to understand and familiarise yourself with how iron supplementation works. When trying to supplement iron it's really important to know how to do it properly and actually take enough to raise your ferritin (it's really quite a lot) and also how to test properly to make sure you are not going overboard . The dosage is all based on your body weight and the correct equation is in the guides.
4 sprays of the better you iron spray is a very low dose and unlikely to do anything to your ferritin level other than keep it from dropping maybe, it's not enough to raise levels.
This of course is only one aspect but as others have said ferritin is important to have at optimal levels. I have been working on raising my own ferritin for the last 8 months and finally am getting to an optimal level!
I think your best way forward is to see an iron specialist. My transferrin saturation % was 18, that was the deciding factor, and my ferritin was 30. I was told that I had a significant iron deficiency. You can't be expected to figure this out alone without this expertise. Feel free to message me for the specialist's details. You can consult online or in person. I did have an infusion as a result.
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