I am in Jersey CI, & was bedridden for years. Then a friend gave me some old T3's which improved things a lot. But still no diagnosis from GP. I eked out the increasingly weak 5 year old T3, then bought some metavive 111. Things improved a lot more, though T3 serum even lower, & TSH now in range, but still very low. Also cortisol rather low at 314 nmol/l. 9am fasting, but had to take 2nd metavive at 3pm day before test.
Also corrected calcium now even lower than before at 2.16 L. I am on maximum prescribed dose calcichew, + I buy calcium, vitamin D3, magnesium, k2, & a bit complex.
I had below range transferrin saturation, but now I have over-range iron.
TSH - 0.62 mU/l (0.50 - 5.00 )
FT4 - 11.7 pmol/l ( 10.0 ) - 25.0 )
FT3 - 4.3 pmol/l ( 4.3 - 8.1 )
Iron 31 H umol/l ( 7 - 30 )
I need to find a way of finding out if I have pituitary damage, as I am getting headaches & a whole host of other problems, also I have osteoporosis, osteopenia & disc degeneration, with arthritis, & wondering if these are related to the low hormone levels.
DRs here are private practice,& very expensive, so don't have any alternative options when things get worse. Any advice welcome.
I previously posted this on Foggies invisible illness BTW,
Many thanks
Written by
Jenny583
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When were those labs done, and what were you taking at the time?
You haven't given us a range for the calcium, so difficult to see just how low it is. Did you have your vit d tested before starting supplementing? Vit D will increase absorption of calcium from food, which is why we take the vit K2 to make sure it gets into the bones and teeth rather than building up in the soft tissues.
However, you are taking rather a lot of calcium, with - apparently - very little result. Has your doctor tested your parathyroids? If not, that should be your next step.
As to a pituitary problem, there are ways of testing it, but doctors are very reluctant, because they believe that it is 'rare'. But, it could explain why your TSH is so low with those low Frees. Here's a little reading matter for you:
Takin calcium supplements is not a good idea unless you really cannot avoid it:
The lab was 24/10/2018. Calcium = 2.26. - Adjusted calcium 2.16 L - mmol/l ( 2.20 - 2.60 )
Around 4 years ago, I had been very ill, was told depression, so asked for parathyroid levels to be checked as my neck was weird whenever I felt a worsening malaise.
( I had -10 years ago paid for bone scans ) but was told I was too young to have treatment. In Jersey you have to be very old before they will treat. But I told GP that I was reluctant to continue to self medicate with calcium, as I had not been told the levels, & kept getting kidney stones, & other problems, also I wondered if I had tumour on parathyroid glands.
So, it turned out I had secondary Hyperparathyroidism, & para's were 'stealing' calcium from bones.
I managed to get appt with the only endo, or rather a UK temp registrar, who clearly was not familiar with Jersey policy! He looked at his computer Google thingy, & informed me that calcichew not good idea, said (vitamin C infused) kids orange juice from sainsburys was the only cure for the Jersey pandemic of hyper parathyroidism, & that was why he was shipped over to Jersey. I couldn't get a word in, so couldn't tell him that there is no sainsburys here. But he gave me a script for vitamin D to take to GP. When I cashed the script it was calcichew again!
The only option here, which is just calcium/vit D3. The whole escapade cost me several lifetimes budget of tinned sardines. It was only, I think, a year ago that I got a vitamin D test, it was just in range. I have not managed to get another parathyroid or vitamin D test, & this ferritin test is the first that I have got.....
I had malnutrition a few years ago, also anaemia, but at the time I wasn't told this. The antiD's made me very ill, felt too Ill to sleep,so I stopped taking them, I then had bad withdrawal, couldn't hold anything down, felt too Ill to sleep, dangerously high BP & neurological probs lost 1.5 stone. Told I probably have 'wheat allergy'. The seizures & high BP then went the other way, went very low, I think the 4 lots of antibiotics in 2010, ( I had to research to find the word 'antibiotic' as my IQ has halved! ) may have damaged my gut. 2010/11 cost me £1000's & all I got was 3 kinds of high dose BP meds. Anyway after repeated bouts of shingles I was told to take iron & b vitamins. I have now stopped taking the iron, as the saturation is now good, they don't check other nutritional levels here, we have to self medicate, going by symptoms. I had increasingly worsening signs of hypothyroidism from 1982, when I was taking carbimazole for thyrotoxicosis,
But it got really bad 10 years ago, that's when BP & cholesterol went high.
GP told me that my thyroid had probably packed up now. I asked what she meant, she told me that it had been going for years! that was the 1st I heard of it, but then after she prescribed propranolol nothing more was said about it.
Well, I don't know what to say. It sounds as if you have been very, very badly treated, and that your have very bad doctors where you are.
I agree that calcichews are not a good idea. But, have they done anything about the tumour on your parathyroids? Can you not get high dose vit D from Amazon where you are?
You didn't tell me about the vit complex. Nor what you were taking at the time of those labs.
And, when your doctor said that your thyroid had packed up, why didn't she prescribe thyroid hormone replacement? And why did she give you propranolol?
I understand the problem with 'antibiotics'! It's a word I can never remember, either! Along with several other words. I keep a list of them on my desk, for handy reference.
I'm sorry GG. I wrote about the best vits, I swear! but it has vanished....
I had to individually dose with b vits & separate iron, & vitamin c till I felt well, & folate & b12 were in range, with advice from here. Now I take the best quality B + C complex, but every other day only, haven't taken iron in the last month, as I felt inflamed on it. I seem to have healed my stomach, so am probably absorbing very well now.
I needed to prove that the low calcium & tsh, ft3, ft4, were not caused by malabsorbtion, I have succeeded in that. I suspect that the reason I was not treated for the hypothyroidism all those years ago may be to do with changes in the TSH testing, & Jersey policy of keeping us sick,& on AD's & propranolol, as opposed to treatment of primary disease, as the GPs here are all private, + they make medical notes disappear every 10 years or so. They are not accountable here, & at around £50 for 10 minutes, & no access to serum results or medical records, + a policy of using up cheap stocks of banned by every other country drugs - patients are kept in the dark, followed by coffin. My family were killed that way, multiple organ failure in the case of my Husband, they had him on opron!
I found a way of tricking the new GP into sending me the serum results, + I have broadband, most here are not so fortunate. I intend to make the most of it, as I need to be well enough to start world war 3... this month...
I have just got the Amazon high dose vitamin D3 from post box, took my 1st 1. It will be interesting to see if I getter better on these - without the calcichew. At that rate I may as well pack in big pharma's assassin's & grow my own HRT, as the hormone patches are the only thing I can't source on black market!
R.e The Dr who told me that my thyroid had finally disappeared without trace? I can only guess that maybe it dipped below a usually borderline result through maybe an infection? when I asked her on a return visit she replied that it was fine again... It sounds as though they are not too concerned about serum levels here, as long as you have a pulse. I have had several out of range levels over the years, especially nutrition, calcium, cortisol, & thyroid, but they just shrug & say it's enough for your body, your brain can manage without, that's what a (male) second opinion told me 18 months ago, I couldn't remember where I had parked the car after that encounter!
I don't know that I have a tumour on gland, but the only way I could find out if that's the case - is if I can get to a UK private hospital for scans, unless I can find a way of putting the Frighteners on the local GP mafia?
"And why did she give you propranolol?" For the high BP, I preferred Propranolol, as I heard it's good for C-PTSD which I have, now I know it's very bad, & I can't tolerate any drugs, gave it up last year. I was on AD's most of my adult life, till 2 Y ago. I think these drugs did a lot of damage. Turmeric, 5-HTP, & metavive seem to be helping & are natural. The B's & C pills are - Terra Nova with vitamin C 100 vegetarian capsules by MAGNIFOOD, they also contain a lot of weeds!
I have stayed alive mainly through advice from you guys. Everything I have researched is through links/advice from here. The following is rambling & long I am sorry for that, but I have to do a lot of things now - that I was too Ill to do before. I even have to write my memoirs in the next 2 weeks, no mean feat as I have amnesia! Bless you.
Hi. Looked at old post to see your T3 and T4 frees are marginally at the low end of optimal. Dr Westin Childs has written an article on how to increase your t3 levels naturally.
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