I have high transferrin saturation 45% range bottom 40%
Low ferritin 32 bottom of range is 30
im hypothyroid on T3 mono
Pernicious anaemia given 1 injection a month but supply own methyl b12 injections and have about 4-5 per week
I take methyl folate that result is good at 18
I have a double mutated HFE gene but never had iron over load unless that’s what triggered my hyperthyroid off years ago, they have destroyed all hospital records and lost part 1 of 2 in Drs records so no way looking back on that one
Anyway I feel tired and out of breath, all vitamins and minerals are good , vitamin D was 150 which Endo said was a very good result
Selenium at top end of normal, b12 was 2000 which is to be expected
My hands the veins swell up and down causing pain
I have some dreadful headaches that I can not get up or move much
I have below range cortisol he endo says not addisons, had 3 sat now all stemmed well
I go hypoglycemia every 4am and also randomly throughout the day, I do not have an insulinOma
But no explaination given to as why I go hypo,
A have days where my body aches so much I can hardly move, Im on T3 and these pains are different to when I was on levothyroxine
I get out of breath when I try to walk a normal pace so have to walk really slowly
Dr don’t seem to have a clue
I am fed up with it all
Fatigued all the time, sometimes eyes get a yellow tint but goes back normal quickly. No stamina at anything at all
Memory a bit shot
All blood seem good apart from the ones I am asking about
Any ideas ?
I may get more sense from this forum
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Pascha1
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I had some blood work done recently like yourself I think my ferritin is to low mine is 66..range.. (23.00..400.00ug/L.
I don't really understand the full blood count but my white cell count is 4.7..range..( 4.00..11.00) my last vit D was insufficient at 39 and my B12 was low as was my cortisol.
I'm also on T3, although I don't really feel hypo, I do feel hyper but my bloods don't show over medication 🤷♀️ I to have terrible body or bone pain, I mostly want to sleep for England but need to get up through night to wee, sometimes up to 6 time's in the night so that is probably why I'm feeling so tired 😣like you I have no stamina, it kills me to go to my local town just to see the gp or get some groceries in, I also sweat like I'm in a sauna and my heart beats out of my chest, I flipping hate being like this 😠
I should mention I was diagnosed with primary hyperparathyroidism but gp as dragged his heels on this so I've taken this into my own hands now seeing a specialist in June, but like you I'm getting nowhere with my gp😠 I just feel so ill, I was told after my thyroidectomy I'd take the meds and be back to normal..... Thyroidectomy in 2019... Still waiting to feel normal 😠😠
have you ever joined Paul Robinson on face book. He also has a website which is very good on T3 and knows all vitamins minerals , cortisol etc, so if you haven’t checked him out I would highly suggest you do he’s helped many get better taking T3.
What was cortisol level ? Your D is below range you need loading doses of D3 take with k2 unless in blood thinners don’t take the K2 , if you are seen
I got endo they deal with Vitamin D as it is a hormone, no wonder you feel crap
My endo said everyone who has a thyroidectomy comes back saying they don’t feel good on T4 and all need T3 in there somewhere, it took 35 yrs me being crap till I got T3 but all vitamins and cortisol has to be good or you won’t feel well.. if the cortisol is below 350 you need a short synatchen test done, endo will do that
Did your go treat you for your vitamin D deficiency ? If not he needs reporting
Sorry I don’t know much about parathyroids as I had a decent surgeon who didn’t damage mine, does that mean you have no calcium , if so is dr giving you that as said sorry I know little about Parathyroids
And what level b12 was yours. As if low they may need to do anti body test for pernicious aneamia as if you get one auto immune disease many can follow said to come in 3s
Good luck , let me know how specialist goes please
Hi.. My B12 in 2022 was 3.95..range.. 197.00..771.00) its not been done since 2022,My magnesium was 0.86..range.. 0.70..1.00)
Folate..3.4..range.. >2.50
All done in 2022
Vitamin D done on may 2nd 2023...39..range..( 50.00..150.00)
Ferritin done in May 2023..(66)...range.. (23.00..400.00)
My cortisol was low at 175 no ranges 🤷♀️ had the test in hospital just said I responded to the test, i produced cortisol.
Ive spent a small fortune on vit D and B12 products tablets /sprays but all give me stomach /bowle problems (colitis /lactose intolerant) I give them all a good go, but had to come off due to cramps /diarrhea they inflame my colitis, and I'm sure the thyroid medication I've tried since 2019(t4/T3) is doing the same, gp not interested in doing full vits/minerals or re doing cortisol last cortisol was 2020!
I just feel my gp and endo are gas lighting me, they really don't seem to care about my health 😢
sounds like you may also have pernicious anemia, your Drs sound dire 🥲you probably need vitamin b12 injections, take a look on pernicious anemia society web site it has a symptom list on there you can print of and give to you Dr. I hope they sort you out soon , not sounding good at all .
Actually my parathyroid as gone OVERACTIVE (primary hyperparathyroidism) which is not really heard of after thyroidectomy it's usually hypoparathyroidism the paras shut down causing low calcium that's why you get calcichews after thyroidectomy (may 2019) but my surgeon told me to stop them after only 4 days as my calcium was at the top end, then it went over in July 2019 I was rushed into hospital passing a kidney stone, then in june/Aug 2020 both calcium /pth went over range got the diagnosis of primary hyperparathyroidism and its been hell since with the NHS, but I'm seeing a specialist on June 22nd in Liverpool 👍 so I reckon I've got a lot going on but my gp is dragging there heels 😠
Hi, in your position I’d be asking the GP to investigate the hypoglycaemia further. It can be problematic once a person has so many they lose the ability to be aware it’s happening. In light of the fact they happen regularly at 4am it’s is worrying you will not wake and be able to treat. No ne should have these daily, it’s a sign of a serious problem. Have you shown the GP your monitor so he/ she can see how significant the problem is. Have you tried testing before bed and eating slow release carbs in the hope of avoiding / reducing the incidence of 4am events.
I too have yellowing of eyes frequently for the last five years , I was told it’s an age thing and perfectly normal. I explained to the GP I was asking as it had only happened to me previously was 50+ years ago when I had jaundice. Hope you get answers
my gp has written to the endo to see me again re the hypos, I will make a point telling him if I miss my sugar dip chocolate fi. I’m unable to function properly all the next day and have a headache from hell, feels like I’ve been partying for a week type hangover but worse as not had pleasure of drinking. Thanks
Good luck with that one! They will probably tell you to use the approved hypo cure and chocolate is well down the list. How low do you go? Don’t forget to take your meter showing the consist hypo episodes. Otherwise they might try to suggest it’s in your imagination or you are overthinking things. Nothing like proof to show them. Be prepared they may do an HBA1c which given daily hypos they GP should have done already. They also love the glucose tolerance test. At least you have forewarning of that as it takes 2hours plus and patient fasted. Make sure you test at every hypo now and record in a diary what you took to recover. Good luck
I did with m6 old endo get nvestigated for an insulinOma, it was proved I went hypo but not enough for insulinoma, the tests were not back when I left th3 hospital and got a tele consult, and he said yes I went hypo, but someth8ng distracted him, my brain isn’t good on phone anywa6 , t has been proved by that test and I also have results on continuous glucose monitor, I also went hypo when having an endoscopy so all is recorded the6 just need to fix th3 puzzles together. I am seeing a different endo now anyway, but so fa4 just tele consults, so do not think he was listening, all hard work
But hopefully I will get there in the end I’m not giving up just yet
I also go undetectable and don’t notice in the day it’s just the 4 am that really gets me, other than few odd occasions. Im begining to learn some Drs are complete waste of time. Space .
Vit B12 and iron are coenzymes. So by dosing high B12 and not similarly iron, you are causing an imbalance resulting in your current issue of breathlessness and pain in your tissues.
If I were in your shoes, I would discontinue the B12 injections for about a month, and supplement with methylfolate and try to bring about a better balance in these coenzymes. It may be the monthly injections are sufficient for your needs.
hi thank you for reply but I don’t think that’s the reason as I just had another transferrin saturation index done and now is below range , same b12 taken and I have been doing the b12 years and never effected results before, I already take methyl folate to balance b12 out
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