I am thinking of sending off for a finger prick test from "Monitor my health UK" as I am no longer able to obtain blood tests from GP.( MMH are only test facility that do Jersey C I. I recently discovered that the biotin that I have been taking for many years is the highest dose available, so likely that has skewed results local GP results.
Having said that, in spite of this, my printout results of 3 years were on floor. I don't know if the years of low iron caused the low thyroid or vice versa. My aim is to rule out central hypothyroidism_or skewed past blood tests, as there is possibility that symptoms are now caused by low iron? as I am also hypocalcaemic & low ferritin/. I don't want to spend more £££ on whatever is not needed, & so I wish to concentrate on what IS needed. I spend a fortune on OTC supplements (including iron), & am struggling to make ends meet.
Trouble is - the iron is giving me a huge appetite, so I can't get into any clothes, as the weight is starting to pile on again! so I can't get out to expend energy. I am unable to obtain prescription thyroid medication because of 0.02 TSH, so I wan't to see what a very low dose of OTC 25mg Tiromel + 2 x metavive 11 is doing.
I wan't to ensure that the blood gets to the overseas UK lab in time, as I spent £164.50 in the spring because the (within walking distance of hospital phlebotomy) from surgery did not get to local lab on time.
If anyone has experience of postal overseas tests, could they advise if buying this overseas test is a wise move?
Thank you for everything.
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Jenny583
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Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Yep. Doing all that. Pate 3 times a week. Meat every day. B vits. Iron pills, I buy all these on advice of GP's - going back years. I managed to obtain a ferritin test last spring, saw it on the GP's PC. It was 46, the highest it's ever been, but hair still not growing.
Don't know what the transferrin sats were though as only TSH & ferritin were done, but a GP from another practice a couple of years ago opined that my alopecia was likely a combination of hypothyroidism & iron deficiency, hence my buying more iron. Never been treated for either. I am not able to obtain any tests as I self medicate for my hypothyroidism.
Forgot to add that I had full blood panel ordered by endocrinologist 1 or 2 years ago. As I was supplementing B vits & iron + very high dose biotin I cannot rely on that test? but from what I can recall the B12 was 500 odd & saturation only just in range.
what B vits are you taking? ones with folic acid or with the methylfolate? - low ferritin can be due to an MTHFR mutation and if your B vits have folic acid in them then they can be doing you more harm than good. I sympathise greatly with you - I'd kill to have a ferritin level of 46 - my last test showed 13 and the one before that showed a level of 10. I then looked at previous tests and my ferritin has always been that low but my GPs were always content to tell me my results were "normal". Ferritin deficiency and hypo often go hand in hand and it is like a vicious circle - a body will struggle to get anywhere with thyroid hormone dosing if the ferritin is low and it can be difficult to raise ferritin if hypo.
I usually take individual vits like methylated B12 & folate, et al, on alternate days, then an all-in-one b complex on other days. They are all expensive stuff. I don't take folic acid or cobalin b12 in case I have the MTHFR mutation. I got my ferritin level up to 46 last spring via vitamin C & iron. My iron levels are twice what they were with a level of 46, so I was probably under range before.
My previous levels were probably similar to yours, ( assuming you got a ug/l 8-2005 that is), as I was transferrin saturation under range, but the lab would not test a lot of the GP requests including ferritin, I guess the lab technicians consider they know better than the GP's here?
I made the mistake of double dosing the iron I bought 2 years ago, & got nervous so stopped for a bit after that, as the iron just sat in my blood rather than going into storage, the 1st ferritin printout I managed to get showed 46, with over range iron, which was normally very low in range. I think chronic disease like hypo lowers the transport that iron needs to travel into storage too.
I'm very sorry that you have such a low ferritin. I got mine up to 46 in a range of( 8 - 205 ug/l ) in October 2018 by going over range with large doses of iron. 46 is still low in range though, is that the same range as you got? You are right about vicious circle! A lot depends on age too. I guess if you are not bleeding then it's probably the thyroid. I found that cooking in a cast iron fry pan helped. But biggest help is definitely obtaining good level of T3 & T4.
Obviously essential to regularly retest TSH, Ft4 and ft3
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
If/when also on T3, and Metavive make sure to take last third or quarter of both Metavive and T3 daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
I tried to explain all that to Dr's, even printed off medical papers detailing the effects of thyroid medication on TSH results, also the effects of high dose biotin on essays, but they would not even look at them. A complete waste of my time, ink & paper, not to mention printer.
I have a large pile of medical research documents that i carried around with me. No 1 will ever see them, they wouldn't even look at them. When I was able to obtain tests & printouts ( from previous practice) the (out of range) results were ignored. I am still on my own.
I will order a finger prick test From "monitor my health" Now & see if I can rule out inadequate dosage & take it from there. I just want to put my affairs in order, that's all.
If you have a digital thermometer you could try taking your body temperature from under Your left armpit FIRST thing in the morning. If it’s consistently lower than 36.5 then you are probably under treated.
Obviously blood tests are better but until you get one you could try this to find out if you are Still hypo & under treated.
I too have hair loss & it’s horrible but my fatigue has improved with supplements, better nutrition and optimal thyroid replacement.
All the main medical papers say that this is so. But there may be other factors. Also Hypo may be secondary to another 'primary disease'. Low T3 of chronic disease is one example.
Just prior to self medication, B4 I learned that Dr's had been keeping me in the dark for years - I had a temp of between 35 -36. I wore heavy clothes & coat & a trapper hat almost year round. I used to pass out if temp went below - I forget what - 35? I persuaded GP to take temp once, she did it twice it changed in a matter of seconds by 2 points. It was around 36. They told me to take a cold shower every day, to grow brown fat, told me I need to be more cold!
By self medicating with T3 & metaviveI have got it up to 36.3. But without tests I dare not take more T3, as I don't know how accurate temp alone reflects levels.
My aim is to rule out continued iron deficiency as a drag, as I have malabsorption syndrome - as did my Mum. I had all the deficiency complications as a result, but I had to diagnose & treat myself.
I won't order that UK test though, as they charge VAT then lie about it. I will wait till I'm forced to see GP, then ask for as many tests as I can, then seek legal means if necessary to try & obtain results & records.
I hope you find the answer to your hair loss, maybe the supplements will let it grow back soon? I hope so. x
Thanks for reminder. Yes, My aim is to get a ferritin of 70, then take it from there.1 Gp told me that too. I started taking iron soon after I started taking low dose T3. My hair grew back each time, then fell out in clumps each time - after a few weeks. My TSH became suppressed, so the initial boost to my (still in range) TSH was soon lost, & each time I was conned into reducing T3, my hair & skin got worse, & no amount of resuming of dose brought it back. In 2018 I had been taking a double dose of iron, as my transferrin sats were still under range, but I felt ill & inflamed, so I stopped the iron, my hair fell out again, & a few weeks later I had a blood test. The iron in blood was over range. All the while I was unaware that I was taking very high dose test skewing biotin, & that I should have left it off for 7 days. My aim is to get a ferritin of 70, then take it from there.
I buy B12. It was 2 years after I started supplementing B12 (on advice of GP )that I was finally tested, it was only just in range! but I developed nerve pain in those 2 years. 1 of the reasons I don't trust GP's. My Mum had pernicious anaemia, the drugs they finally gave her for the complications led to her death.
Oh that's sad about your Mum. No wonder you are a bit worried about B12. I was bottom of the range for B12 and Ferritin and it took quite a while to bring myself up to good levels. A couple of years for B12, I think. I ended up taking 5000 mcg B12 and that sorted it out. I now end to dip in and dip out of taking a 1000 for a few weeks and then leaving them off for a while. I do remember being in bed a lot in those days because I had no energy and couldnt concentrate on things. As well as those two things, I began taking T3 and ditched the T4 on the advice of Dr Peatfield (have you read his book?) and things were much better. Good luck.
Gee thanks for your kind words mstp! I never managed to get T4, in spite of recently being informed that I was hypo for many years! I didn't know that I was B12 deficient though, someone on this site pointed out that my B12 was very low in range - after 2 years of self sourced B12 pills, thanks to a previous GP's habit of sending me printouts of my results. Sadly not all GP's allow us to see our results here in Jersey. I took advice from here & started buying sublingual B12, & very quickly saw an increase to top of range! I havn't read Dr Peatfields book, no, but I may do, we'll see.
Do you take iron, or is the now & then B12 carrying the load?
You are a very good DR, if only you were allowed to treat us! but then you are doing so, & we are helped by your advice which is free! That is real peer support, in the face of a medical death culture. I will only listen to the people on this site, & report back. Thank you.
Hi again Jenny583. I take a course of both iron and B12 at least once a year now sometimes more depending on how I feel. Dr Peatfield's book is good. Sometimes people on this site don't give the right advice although the administrators are very good and some of the regulars. I have no actual complaints but I suppose my message would always be to listen to everyone, read around and talk to your GP.
In the beginning when i ditched the Thyroxin, my GPs thought I was some kind of cranky person I think. I do feel it is good to be hand in glove with GPs though so I explained to them that their training on thyroid problems hadn't caught up with patient experience and that there was a gap in their knowledge at present which eventually would probably sort itself out. I think they kind of respect me now - ten years later - but I'm glad I didn't fall out with them at that time because it would have been easy to do so given the state I was in. Good luck. Hope you feel better soon.
Great that you are respected by the GP's. I wish I could say same. Different in Jersey to UK. Here GP's are millionaires. So different to UK GP's, except that they receive the same training, as they are invariably from England here.
I am feeling better already! I will now concentrate on getting to root cause, & if necessary going through every GP practice in the island to get to truth!
Jenny, don’t want to disappoint you and you can try the test but after watching many interviews about Theranos, my impression is finger prick test is not very accurate. The reason is finger prick blood is more contaminated by skin cells and also as pressure put on finger, some cells burst and that changes the result. Maybe, you still can try to get a test via your GP?
The other thing I wanted to say: stop taking supplements that messes up with your biochemistry.
The problem with Theranos was not finger prick blood testing but rather their methodology - they took many times less blood than the finger prick tests referred to here and the particular problem was their diagnostic tools which were not peer reviewed and totally bogus.
Finger prick testing run by the likes of Medichecks, Thriva and Monitor My Health are often very accurate and directly comparable to blood draws done at the GP. For example, I often do a finger prick test myself the same day I have a blood draw with the GP as they don’t test everything I would like. The result from the GP and from the finger prick tests are often within 0.1 units of each other - so similar that it’s impossible for me to conclude that the finger prick test is inaccurate. And I’m certainly not alone in finding that. Many here rely on finger prick testing and find it to be perfectly accurate.
Also have to challenge your comment around supplements. This simply isn’t true that they mess up biochemistry. Of course it’s possible to take too much of some supplements but, where there is a deficiency, it’s necessary to top up levels via supplementation and test to monitor levels.
My point was specifically about problems with finger prick blood test which I heard from John Carreyrou interviews (as he gave speeches and interviews after publishing his book about Theranos) - regarding issues with such tests in general.
Glad that you had good experience with tests accuracy.
Regarding supplement: as OP said that her iron supplements increased her appetite (presumably cravings) and she started to gain weight, it makes sense to stop taking such a supplement - not all supplements of course.
I take mine supplements and watch how they impact my body. If it's negative, I stop it.
I do stop supplements when they cause problems, however I must give the iron a chance, as I am very pale, breathless & tired, & have no way of knowing if I am absorbing the iron rich foods, which - anyway I can't really afford to buy. The highest I got the iron was around 1% + I don't know if biotin skewed results. Food here is ridiculously expensive compared to UK, also more so since pandemic. Iron is cheap.
Also, as you mentioned that you are "pale, breathless & tired"... Did you ever checked your B12 level? those are classical symptoms: Vitamin B12 deficiency symptoms include fatigue, pale skin, weakness, sleepiness, numbness and more.
I was not able to check results, as I was not told anything by GP's & accused of drink n drugs, & that I needed to buy vitamins, that I was "rundown". ( I had recurrent viruses & shingles). It was 2 years after buying individual supplementation of all B vits & C before I managed to find out my levels of b12, - & that was only by accident - as I was too ill to answer the phone, so then new GP that had come straight from UK, didn't realise that UK law on disclosure of medical results does not apply to Jersey - sent printout... But by then - B12 was in range at nearly 300.
I get numbness by day & pain by night, in legs, & sometimes in arms. I don't get much sleep, I get brain zaps & jerking/twitching, that is getting worse, also extreme brain fog & bad eyes, dry mouth etc. I am waiting for the opportunity to go to supermarket to stock up. I am having a good day today - as I am able to type this - albeit very slowly. If it was not for the monsoon I would be shopping. Every 3 weeks I am able to shop nearby. B12? could be. I am attempting to eliminate primary disease, 1 by 1.
Mum's primary disease was pernicious anaemia, but she only managed to obtain B 12 injections not long B4 she died. I believe her hypothyroidsism was probably secondary. Not long B4 she died she was prescribed at least 14 drugs, (20 years ago). I am told by relatives that these drugs were a bribe to silence her. Some of these drugs were B12 injections, also folate, HRT, Fosomax, B6, Thyroxine, zantac, + various proton pump inhibitors, she had severe longstanding osteoporosis. Like me she was accused of smoking/drinking/gluesniffing - whatever, but, like me, at least back then, she was t total, & did not smoke.
As a child she was eating sand in gutter, & often ended up in Italian hospital - with blindness from lack of vit A, berriberri, pellegra, iron deficiency, worms, etc. It's clear that she had malabsorption, possibly from birth. Yet this was never acknowledged as such, she also had recurrent TB - which halted her medical training. (she came from a family of pioneering Dr's!)
The only thing that she told me in 2000, just B4 she died was that she was found to have no intrinsic factor. 1 of her sisters revealed that Mum was coeliac.
I am coming up to the age now (63) when my Father died of 1st & last heart attack.
I do not wish to die this way, as I have yet to write my will etc. All his family died young, or relatively young. His sisters especially. 2 of his sisters died of hypothermia. Many were hypo or diabetic, all except maybe 2? had heart disease. I have high cholesterol, ever since they have tested, which is 20 years ago.
I am counting on this being B12/ iron. We will see. Trial & error will show the root.
have you tried magnesium? I'm just thinking of what you describe your sleep to be like and it sounds similar to what mine was - until recently and I changed my magnesium from oral supps to magnesium chloride oil which you rub onto the skin. My sleep is deeper - I am getting to sleep more quickly, able to sleep through and able to wake earlier feeling more refreshed. I use the Ancient Minerals brand - it seems expensive but a bottle lasts absolutely ages - I'm talking years here.
Yes, I have tried magnesium oil, on & off for years from 2011, & very recently I started using it again. It has saved my life many times, from 2011. I make my own, from magnesium chloride powder. I had to stop applying it 2 weeks ago, as it was causing peeling skin, also the detox effects make me worse. I only use it now if the pain is really bad & wakes me up too often. I'm really pleased it helps you to sleep.
But for me it's a little for pain, when absolutely necessary!
Oh that's a shame Jenny 583. I've been pondering this myself, so can I ask, as a matter of interest, what the detox effects were that you had - just so I can be aware of them myself and know what to watch out for as I may need to lay off skin application every so often if that is a problem.
I find it hard to describe what I feel, maybe detoxy, flu like? just feeling more ill I guess.
I am very sensitive to drugs though, also very toxic, so detox overload is all I can think of, as magnesium is good. If I were you I would keep a diary, & note any changes with medicine changes. It's all trial & error & lack of sleep isn't it!
Ah Jenny583 that must be miserable for you. I do keep a diary and record meds and responses - don't think Samuel Pepys faces much in the way of competition from me in the diary writing stakes!!! So far I haven't experienced what you describe re mag detox but can imagine what it would be like, so will maybe switch it up every now and then to avoid that for myself. It is indeed all trial and error - and sometimes we learn the most from the errors! Good luck to you too - I cannot believe that you have to get a lawyer to get access to your blood test results - crazy - I hope you are successful and that you get some answers.
Thanks Redlester, sorry, I did not mean to imply that you don't keep a diary! the old brain is not working any more, I should have said that I forget that Iv'e written things down - then come across them years too late,lol, I'm sure you don't do that though!
I suspected detox effects as - I am poisoned by ant poison - more each year & immediately experience worsening neuro effects. Magnesium is cited as a detox, so 1 + 1 = here we go again, no diary needed for that. The skin on my hands is almost stopped peeling off, just a bit on my face now, I will only apply the magnesium only when the pain wakes me, from now on.
Trouble is here there is only 1 honest Lawyer, but he is a an international financial litigation lawyer, & I'm scared of alienating him, as I have some very big fish to fry B4 I die. Human rights lawyers are not permitted here.
I could ask his secretary if she could recommend an honest will Lawyer at same time as I ask for where to go for muscle to access medical records, (wills are very expensive & complicated here). Lawyers who write wills usually take the entire estate, especially if there are no wealthy relatives! I have seen that happen many times, so I don't know if it's possible to obtain records in such a corrupt place, attempts to gain access to other records made my health so much worse, & lost me a really nice GP!
I am about to phone surgery to ask for HRT & cetirizine, ( run out ), if I don't get a script then I will write to her a formal letter asking for all my existing medical records, & take it from there.
BTW I posted a link to iron deficiency, after looking at your dire! ferritin levels, & wonder if, like me you have fragile spoon shaped nails? x
Hi Jenny - what an absolute nightmare - I had no idea about any of that on Jersey and assumed that it was roughly the same, legal wise, as the rest of the UK. I am wondering, to circumvent the corruption and the difficulties of alienating the legal personnel in Jersey, whether it would be possible for you to instruct a UK lawyer and ask them to act on your behalf at least re the medical records bit, just leaving the wills and 'big fish to fry' bit for a lawyer in Jersey. It is difficult enough coping with all of the sickness you have going on and trying to help yourself to get well without also having these additional burdens to deal with. As for the ant poison, well the mind boggles - I would have no idea where to start, other than to say it must be horrific and to wonder how long ago it happened to you? hopefully if you send a formal letter asking for medical records they will come through for you.
I think I did see your link re ferritin - but I saw so many yesterday that I will have to check again - I think a lot of my problems stem from very low ferritin levels - I am using the same range as you and one of my recent tests was below the bottom of the range. I am about to do a medichecks iron test on Monday and have had to go off all my B vits in preparation - it has been a difficult week, almost non-functioning, but just goes to show how all of the things that we take act in concert with each other and you will only get some semblance of functioning when you are taking all of them and it also seems to show that I am going to have to be on this lot for a long long time to come. I cannot wait to get the test done and tuck into breakfast with a dose of B complex!!!
BTW you said "I should have said that I forget that Iv'e written things down - then come across them years too late,lol, I'm sure you don't do that though!" - I am afraid I most certainly do!!!
I'm afraid it's not possible to employ an independent English lawyer here. Having said that a complicated legal 'precedent' was apparently set here recently & an English lawyer"allowed" to act for a group of people here, but it was a sham, he was hired in reality by the corrupt Jersey legal mafia, with the sole purpose of burying the truth and avoiding any payouts to the most serious victims, records were buried, everything else was rewritten, enter tokenism. The world believes that justice was done. It cost me dear, & now I am not allowed to sue anyone - ever. On paper I should have access to records, which would though contain the most heinous lies, but without legal help I am without any power, so whether I could ever recover any records, medical or otherwise is very doubtful. BTW, My Husband & Mother were killed by Dr's here.
So Dr's dentists & lawyers are unaccountable, sorry. I will - at some point try to obtain GP's notes, I would be interested to see what the TSH's were over the years - that is if they still exist.
This week I must seek practical advice from charities, I am allowed in theory to do that, as I managed to obtain supporting letters from Dr's, it will be interesting to see what these charities are about in reality! rumours abound that they are diabolical! We will see. That's 1 of the reasons I must rush my recovery, brain fog & fatigue are hampering progress ATM.
I had a look at the ferritin bumph again recently, & yes I think you are ferritin deprived, with knock on effects. It's great that you have medichecks & know to omit b vits before test. You don't have to second guess what your'e short of that way, & not waste any more ££ on pricy supplements than you have to - till you rise from the dead! Still, I can't understand how you got so run down, being below range must be ghastly! I wonder if you may have malabsorption to be that run down. Hope you get better miraculously fast. Will be thinking of you on Monday. Bon appetite!
I am so sorry to hear what you are going through and can imagine that you are not helped by having brain fog and fatigue - I know what that is like and how difficult it makes achieving progress on something complex and complicated, especially when the people on the other side of the table have no understanding of what it is like to have these misfiring brains and bodies and expect you to just jump through their hoops as and when they say so. In those circumstances I tend to spell out the difficulties to them and kind of hint that there will be a disability discrimination problem if they don't make reasonable adjustments for them - usually works but a pain to have to do. All you can do is try to take it all one thing at a time and pace yourself in the process, but I would imagine it isn't as simple as all that.
I really hope that post test when I put the B complex back in that it works quickly and that my body kind of 'pings 'back, because until I had to drop the B complex the combined cocktail of everything I was taking was working well and right now I am non-functional. Made mistake of mowing lawn last night and almost collapsed afterwards with exhaustion [lawn is size of pocket handkerchief]. I know for certain that my ferritin has been below range or right at the bottom for about a decade - haven't seen results prior to that but would say possibly for 2 decades as when I first became ill 20 years ago the first thing my GP did was prescribe iron for low iron stores. ~without being able to say definitively I would say it is either malabsorption or an MTFHR problem - will be interesting to see if the methylated B complex and iron rich diet has done anything to my ferritin levels which is what tomorrow's test is about and thereafter if levels are still low I plan to supplement and then test again. Found some transdermal Iron patches online today so might try those to rule out any malabsorption problem. Roll on tomorrow!!!!
I'm sure you will find the reason for your fatigue & low ferritin/ b vitamins. It's as you say, partly a process of elimination. Having 2 choices of blood tests must really speed up that process too, hope you have a good gp. I may have a bet with myself as to whether you have malabsorption or mutant ninja genes though, but it sounds like you've been dragged down every which way over many years & the house of cards that collapsed needs rebuilding.
As for me I'm still experimenting, so I've upped my dose of T3 today, as I will need my last brain cell functioning this week, got lots to sort out, + having a scan.
I'm really looking forward to your results tomorrow too! never mind the mower, have a rest, then get a goat!
Thanks Jeannie - I'm on T3 only too, and this is the first time I have had an iron test since I began taking T3 - I think the T3 [or the absence of it in my case] is also a factor in that there can be a vicious circle with low iron and hypo - one can drive the other [see Dr Nicholas Hedberg's articles on the subject] so I too cannot wait to see the results. I'll be posting them on here for certain. So blood test done and breakfast with a b vitamin beckons!!! Sadly my GP is completely useless. Saw her last year when she finally agreed to do referral to endo - she had a set of my blood test results in front of her, with all the iron numbers, including the below normal ferritin and she wouldn't even analyse them - just said the endo would do it. Endo didn't [she likely hadn't flagged it up to him in referral] and I think that she doesn't have either the ability or the confidence to to it herself [considering how inept she was at analysing my hormone profile which was also among those results]. So, I'm DIY'ing everything, with help from the wonderful members of this forum. where would we be without it.
Hopefully you get a good result with your T3 increase - sometimes it is touch and go for a couple of days until your body gets used to it, at least that is what I find, although maybe it doesn't help to be a bit nervous about doing it. T3 helps the old brain function so really hoping it will help you with all of your challenges. Good luck with everything.
Your history is virtually identical to mine, its uncanny! labs didn't do tests requested (including ferritin) in spite of below range trans sats. I suspect a cover up. Final ultimatum to GP & I ended up with a Pscho lying Endo, who was supposed to test coeliac, & do a full blood count, but did neither, & claimed that I was using 'sports steroids' to induce a very low TSH. He also claimed that I was using T3 at the time (I wasn't) I was only taking metavive.
+ to top it all he claimed that I was over range, when in fact I was at that time 40% in range. I had to pay the GP to do the ferritin test, only this year, by then I was taking a good dose of self sourced iron, result 19% ferritin. I agree with all you say about low T3 dragging ferritin down. T3 aids in the transport of all sorts, including iron. T3 also protects the stomach, & aids in absorption.
Can you not change your GP? I expect you are in a village, or like here - can't change practices easily. When I lived in England I was stuck with a useless GP, who destroyed my career, & nearly killed me. I had to retire on my 23rd birthday. I have no medical records from B4 that year. He 'disappeared' them. I would still be living in England, & working - if not for that.
I felt weird this AM so took my BP 125/56. That seems weird to me.
I hope you don't have to wait too long for results. You are your best Dr. Take care.
I would imagine that unfortunately there are lots of us, predominantly women, who would all have a similar story to tell - tests not done on the say so of the labs, GP's not ordering the correct tests, GP's ignoring red flag results and content to pass them off as "normal", but wouldn't imagine too many of us would have "disappeared" records - although to a certain extent when the NHS went all digital I would imagine that certain quarters conveniently used it as an excuse to wipe out what was on the paper records - couldn't say for sure, but for some it would have been too brilliant an opportunity. I don't know if I was to ask to see my records going back to when I first got sick whether I would be able to see everything which is in my notes or even if they still exist. As far as I am concerned GP's only ever did me harm - nothing but, and it is my intention to stay as well as I can and never darken a GP's door so long as I manage to live. I'm better off DIYing it, scary though that is at times. My GP is useless - I'd imagine she is fairly representative of what is out there - would be a waste of precious energy trying to research and sign up with a different one. I dread the possibility of someone doing an official blood test - say i ended up in A+E for any reason, and them discovering I was doing the T3. I am so sorry you have been ill for so long, I thought I was bad, retired [effectively] aged 34, but you have beaten me to it Jenny!! If I had known what was ahead of me I wouldn't have spent so many nights holed up in the university library and far more time on the dancefloor!!!! Pity we weren't issued with a crystal ball back in the day eh? BTW Just got an alert from medichecks - my sample reached their lab but there was an error with it and I will have to do it all over again. Sigh, so am going to have to try to get back to where I was, condition wise, and then go off all the B vits again for a week, and go through what I went through last week of being non-functional, and then try again. Totally fed up now.
Redlester, I am without words. Retired at 34?! & -after I - assume a uni education? I thought the UK was better than that. As you say this rigmarole afflicts"mostly women", even in this day & age. Nothing changes, does it. The same old misogyny, hiding behind the latest 'fake'21st civilisation', all based on ignorance, of course.
Pharmaceutical companies are behind all this, of course.
I'm so sorry your tests have been put on hold!
I was thinking maybe I should swallow pride & try & risk order a UK blood finger prick test B4 the Jersey gov clamp down on overseas purchases in January, but then I went to get my (only on condition that I get a very expensive womb scan) yesterday prescription , & remembered to ask for the last lot of blood tests from 16/6/20 & also! 24/6/20. The result was - both tests identical = adjusted calcium = ---12.50 below range. Iron 47.83% in range (higher than B4). TSH --- 10.67 below range as per usual. FT4 31.33 in range - higher than ever. FT3 57.89 more or less higher than ever. I almost forgot -- 24/6/20 - there is this --Abbott Thyroid labs 1.0 lUml ( 0 - 6).
Ferritin 39.59% almost double than ever - thanks to self sourced iron & liver pate?
So all problems that I suspected needed to be eliminated have been. So the only under range suspect is the below range calcium - And maybe the very low as per - TSH, & perhaps the high dose 20,000 RDA biotin (which is known to skew all kinds of tests, may be also suspect?) But then maybe the low calcium is causing the fatigue etc?
I don't know your full history, but my heart go's out to you. You are living in a country that I flew to at age 16-23, as did many. The UK seems to have dissolved into a dystopia since I lived there.
I hope you get through this set back, I am praying that you don't have to wait too long for results. I myself will try to find a test facility other than medichecks. I don't know what other facilities there are, but I suspect that you need a comprehensive assay, or else you would have chosen a cheaper option. I completely understand how you feel that you would be better off without GP's. I would feel the same in your shoes. It's good that you still have accident & emergency. Friends in jersey have been saved by the UK A & E. They go to UK each year & get saved by A & E! lol. Please Don't lose heart, many on H.U go it alone, they will help you to get there safely. God bless.
I wish I was better at analysing test results and then I would be better able to make sense of the results which you have posted, which sadly I cannot do [and foggy brain isn't really helping with that either LOL]. But good that you were able to get results so I hope you have done a comprehensive new post about them and that wiser heads than mine will weigh in with better advice than I could give, if you haven't already done so that is. I'm not too sure about below range calcium causing fatigue, I don't really know enough about calcium beyond not wanting to have it in the wrong places, but I don't think that below range calcium would be a good thing as you would want everything to be optimum or as close to as possible, so I hope that your doctors aren't letting that go without proper investigation, but good that the problems that you had suspected have been eliminated which will hopefully narrow down the field of inquiry for you. I take it you didn't want the very expensive womb scan but had to go through with it in order to get the results - what kind of a bargain is that? surely that is tantamount to a vitiation of your consent to medical treatment?
I'm not sure if you have got the wrong end of the stick re my medichecks test - I cannot fault medichecks one bit - what happened was they said there was an error with my sample - something had gone wrong in the way the finger prick test was done and so they would have to send me out a new kit and I would have to do the test again, which does weary me, because it means I will have to go without the B vitamins all over again and will face a week of non-functioning and I am still not back to what was feeling like closer to normal when I had to stop the B vits to prep for the test. I have so much to do that I cannot afford a week of non-functioning. I will have to leave it for about 3 weeks before I attempt the whole rigmarole again.
And don't be thinking that I would be going near A+E - unless I had an arm hanging off [please God that never happens] - my last 3 visits have all been a waste of time as they never came even close to working out what the problem was, despite subjecting me to a battery of "just in case" scans and unnecessary harmful radiation I would rather have avoided. I'm sorry if I sound very jaundiced, I don't mean to, its just I have had my eyes opened so wide by my experiences and don't trust the medics to have my best interests at heart based on the woeful "care" [inverted commas deliberate emphasis] I have received. HU has provided me with the best advice I have had in 20 years - the collective wisdom is incredible. Yep - uni education and professional post grad after that - and all for nothing - good old UK. The really sad thing is I would imagine that 20 years on they are no further forward and are making the same mistakes with a similar cohort of females in a similar situation to the one I was in. Imagine trying to have a conversation of any kind with a GP about MTFHR or COMT defects and the impact they would have on your health. In my experience they would look at you with the blank look on their face and offer you antidepressants. These are people's lives they are messing with, but you wouldn't think it. So, onwards, keep searching, both of us!!!
Hi, Redlester, I'm pleased that you find Medichecks reliable. It sounds like you know a lot more than Dr's. That could be a blessing. The conditions that my GP laid out were that she would allow me the 2 medicines that my previous practice prescribed on condition that I have scan. I agreed as I feel ill without HRT.
I am all too familiar with the rampant panacea of anti-depressants so popular with Dr's now, I had them foisted on me for most of my adult life. They almost killed me. I hope you get to bottom of things & resume your education/career. Good luck.
Thank you for your kind and good wishes. So your GP was basically "trading" your much needed HRT for you undergoing a scan you didn't want to have done - so then she did vitiate your right to consent to medical treatment. Do you find the HRT helpful? I am afraid I don't know more than doctors at all, I am just doing my best to educate myself about what is wrong with me and how best I can help myself - and then trying to find the things which would be best for my body. Sadly, while I might eventually get to the bottom of things, I will never work again - just cannot see that happening. I'd be content enough to just be able to live some kind of semi-normal life. I'm so sorry you had ADs foisted on you - I think that it is too easy for doctors to resort to and can have horrific side effects, and as the great Malcom Kendrick once said they are happy to prescribe them for patients without any blood testing whatsoever to confirm that you may need them and yet they are more than happy to refuse to prescribe the thyroid meds people do indeed need, with blood test results to prove it, on the grounds of some TSH must be over 10 diktat.
The GP I have now is young, but she is forced to tow the line. I don't know if she is milking me, or if she genuinely believes that I will die of cancer on HRT if I don't have a womb scan. All I know is that the HRT is something that I don't seem to function without. Endocrine systems are complicated.
I am horrified that you are unable to work again. I also marvel at the acceptance of your lot - especially given your education, & presumably high hopes of a career. You clearly still have hope, I hope your hopes for a better quality of life come true.
I came across a 3 year old post of mine by accident today, & having just obtained a 3 month old blood test - I am astounded at the difference in results between then & now. And yet I feel so much worse than 3 years ago, in spite of the best iron & ferritin results ever. I feel so old now. Yet T3 on the self sourced T3/metavive is 50% in range & F4 31% in range, the best ever recorded, also transferrin 26% , & ferritin 86 ug/ l - (8 - 205) - again best ever. Only thing under range now is calcium. Yet I am bed bound. I am wondering if it's physical at all now. I have still some old AD's left over from years ago, I'm wondering if I should try them again. Before I could not tolerate them, but I had extreme metabolic dysfunction then.
Sometimes diktats force the issue, no? Hope you will find the answer while you are still young. Best wishes. Jenny
I agree with you Jenny that your results do seem strange in that on paper when you look at the improvement in the result figures there isn't a corresponding improvement in condition and symptoms - I am so sorry to hear that you are bedbound. I know what that is like and it is miserable to be so incapacitated. I would suggest that you start a brand new post along the lines of what you have put in that last posting back to me, which others might not be following now and ask for the opinion/advice of others who are far better placed than I would be to advise you in the hope that you might be able to find a way forward. Something isn't right and I doubt it is the calcium - where are you hormonally re the other hormones and what kind of HRT are you taking - all the hormones are crazily interlinked and one impacts the other. Are you taking estrogen??? It impacts the thyroid and I'm wondering if that is the problem - it could be the case that what you need is progesterone only. I'd open a brand new post about all of this and see what advice you get. While I can understand you might be tempted to resort to the AD's I really hope you don't - I don't think they solve anything but just get GPs off a hook. Hang in there!!!
I'm not young Jenny - I'm 53 and at times feel more like 83, hence the paucity of my ambitions - I'd just like to be functional enough to manage around the house better and do some of the things I would like to do [enjoyable things] as opposed to have to save all my energy and functioning for doing nothing else but the "shoulds" [ie I should do the dishes, I should mow the lawn etc etc] and I am along way off that - on the road and learning every day but still a long way off that. Like I said, if I had known what was ahead of me I'd have spent a lot more time on the dancefloor!!! Start a new post and I'll keep an eye out for it to see what peeps advise you to do.
You are so compassionate & insightful, not surprising, given your experience.
I really don't want to make a post right now, as it would be frustrating for anyone reading it. I have posted B4, & as I am not in the UK the usual advice is not something I am in a position to take, so I would just be clogging up - what is a very crucial & helpful service to UK residents. I am still waiting for GP's bills (for referrals for a scan & for prescription), so I will need to save for blood tests, but what tests I may get is not certain with the new GP, as she is very different & lean compared to previous, so I would have to go by symptoms, AD's are a last resort, Birthday will decide whether I go that route. I want to be well enough to write my will which is complicated & pricy here. My only fear is that I die before I finalise things.
I like to see how others get on here, & I also learn very much from reading the advice, medical links, & outcomes of patients here. I would like to see a solution to your predicament too! Looking forward to your results.
Jenny - just a quick thought - are you taking a B complex??? and have you had your B12 levels checked? when I had to stop mine last week in advance of the blood test I was almost bedbound - they help with energy metabolism among other things, and I'm wondering would this be what you need to give you a kick start as it were???
I do take B complex, yes, & each alternate day I take individual b vits. I was bed bound too B4 I started taking high dose. The B vits did help with a lot of things, but I am no longer tested, so I take them to make sure, as I was very "run down" according to previous GP's, but I can probably now rule beri beri & pellegra out, lol!
Thanks Redlester. Yes that describes how I was a few years ago. I spent £££'s on beds, very expensive mattresses, infra red heat lamps, down mattress toppers, bone scans, & of course GP's who told me that I was "mentally ill" , with the usual gamut of beta blockers max dose AD's, anti biotics, dentists,psyche referrals etc, + had comments like "bad posture, imagining the pain", got scans which I had to pay for, with written evidence of - lordosis, kyphosis, osteomalacia, osteopenia, osteoporosis, spinal wedging etc. All ignored of course.
Ironically - it was because I could not move to answer the phone that I found blood test printouts in mailbox starting in 2017? some time prior to that I started to feel something squirting from something in my neck at same time as I was feeling very ill.
I managed to get a blood test to check for calcium levels only because the psyche that I was sent to pronounced me sane, but physically ill, & so GP had no choice but to test! She told me that the parathyroid hormones (which i could feel doing their job) were stealing calcium from my bones, as I had no calcium in my blood.
I managed to hold food down by eating ginger, then I was able to eat tinned sardines -instinctively. I am much better, but the new GP does not test my D3 levels, & I have not been tested for parathyroid hormones since I 1st had calcium & vit D levels checked. 1 GP said I had hyPOparathyroidism, but changed the subject, another said I had an "hereditory" form of hypocalcemia. The present GP is happy for me to be under range, as most of her patients are low in calcium, but she does not test anything else. It is my belief that a big part of the problem right now is being bed bound, no longer just housebound. The lockdown is now much less severe, however the only places we are allowed to visit are local shops, & friends are not allowed to visit, or I them.
Also I had bone problems as a child. I was prescribed Mogadon at age 12 or so, Mum confiscated them, she later told me I could not sleep for the pain in my back. I don't remember the back pain, but I do remember being in trouble for the GP prescribing the sleeping pills.
I am saving the link you posted, & I will start taking the calcichew, to see if things improve. I bought some exercise equipment a few weeks ago, have not starting using it yet, weird thing is I can only get going in the evening!
yes it was hypoparathoidism I was thinking of - and you describe a "squirting" sensation you could feel in your neck - if your GP has diagnosed this then I think would you not be better to try to push him to follow it up rather than start the calcichews - the bottom line would seem to be that no matter how much calcium you put into your body via dietary modifications or supps you body cannot utilise it properly because the part of the body responsible for its regulation doesn't work properly - I am sure it would be expensive but if you could see a reputable endo privately [likely on Uk mainland] would they be able to help? could you put up a post on forum seeking endo with specialism in parathyroid gland??? otherwise you could be running around in ever decreasing circles chasing test results and ending up in dead ends.
I am not able to get off the island, & I have not come across any reputable endo's in UK. We only have 1 Endo here now, previously locum Endo's came over for 6 months from UK. There are NO privates Dr's here.The only remaining resident Endo phoned me a few months ago to tell me that he is only 1 to remaining, & that his contract is for 10 years. He also told me that he only go's by #'s in reference to my TSH, (or lack of it), in other words he only does diabetes. Also, the metabolic clinic is now no more, so GP's are now the only Dr's here. GP's now do Endocrinology. The resident Endo for next 10 years does the death certificates? So the health service is now 100% private.
I don't believe that I have a parathyroid problem, but if I did believe that I did- I would be sent off to the mental home, which is re-opening soon. I have to be very careful here. I have done some research, & it would appear - at least according to research papers - that my skeleton may be the result of lack of calcium in childhood, & B4 the age of 35 too. My Mum was the same., she lost over 6". Many years ago I was told by a GP that I need to exercise to preserve my bones, & avoid wheat & dairy. Endo told me to eat wheat & dairy & (after doing a google search) told me that I must eat dairy & sardines, & sainsbury's orange juice, ( we don't have sainsbury's here) & also to sunbathe. skin came off & wrinkled when I tried that . He gave me script for D3, but it was of no use , as Jersey don't prescribe D3.
I continued with the prescribed calcichew & sardines, & things improved, no more new beds, but I was not in range until I bought very high dose D3 after seeing advice to someone on this forum. The locum Endo looked at my records & laughed saying - "you've been buying high dose vitamin 3 haven't you!" I said yes, I have. So I was finally in range. Like the other Endo he advised me to not take the prescribed Calcichew. But I am in trouble because I told the GP that I have not been taking it. She wanted to prescribe a drug that -( many years ago) a sibling told me caused our Mothers death. I looked up that drug last month, & what I discovered is that while it had a patent it attracted many lawsuits. But then the patent ran out & it appears to now be prescribed with impunity in it's generic form.
So it's clear that I have to get to the bottom of things myself.
Jenny I am so sorry to read this - you seem to hit a brick wall every which way you turn no matter how inventively you try to look at the problem and I have nothing to offer in the way of advice as it would be pointless; you know your whole situation better than anyone - you are incredibly well informed and as they say, knowledge is power - you can take power over what you will let them put in your body by knowing what has harmed your mother in the past - I am so sorry to hear what happened to her. I have taken to being up front with any doctor I do see now and tell them that as I have been diagnosed with ME/CFS and they can't be certain how my body will "process" anything they can put into an otherwise 'healthy' person without too much in the way of consequences I have to be the one to decide whether to take what they prescribe or participate in whatever tests or treatment they recommend as, long after they have clocked off, I am the one who has to cope with the fallout in terms of worsening symptoms or weeks being bed-bound. They don't like it, but there isn't much they can say against it. For years I trusted them, they were doctors after all, and took what they prescribed. It was only many years later, with the benefit of hindsight and the knowledge I have subsequently acquired that I can see that not only were they clueless, but what they prescribed and the treatments they subjected me to at times have caused long term harm and then there are the things they could have treated but didn't test properly so didn't. If only the internet had been then as it is now I would have been much more empowered, but back when I first became ill we just about had email and there wasn't the wealth of information we have available to us now.
I think all you can do is continue to research and continue, perhaps by a process of experimentation, to find out what works for you and go with that. I hear what you say about endos in Jersey - a lot of us are in that boat in that we are offered an endo but he turns out to be a diabetes man so we are no further forward with that, and am wondering as everything is done by phone consult nowadays, could you put up a post asking for PMs about endo recommendations and then try for a phone consult with an endo on UK mainland that way?? maybe privately - and you could offer to send him copies of your test results etc?? it is the only thing I can suggest now. You said in another post (I'm sort of replying to them all in this one post) that you didn't want to clog up the forum by posting - but please, Jenny, don't adopt that approach. The forum is precisely for people in your situation where you are struggling for help and in those circumstances we have to help each other. And also, by posting and getting replies, you could in turn be helping someone else, who comes afterwards and reads your post and any replies and learns something themselves. So, do post Jenny.x
Sorry, & thank you Redlester! just seen your reply. I am about to try a UK fingerprick test in the morning, ( now that a new 'posts to Jersey' lab test is available). I am following the prescribed protocol, I have not taken biotin, or B vits for a week. The biotin that I have been taking over a period of years is 20,000 times RDA, so very important to omit this prior to tests... I now know. I wish I had known about the 7 days pre test ommision of biotin, & the fact that I'm taking a high dose.
So I hope to either eliminate or confirm hypothyroidism as a main cause of fatigue, weight gain, depression & brain fog, via the online test, or look to other suspects.
I recently switched to bovine IV x 2 (previously metavive II x 2) & am continuing with the 25mg Tiromel in a split dose. I have brought back the dosage by several hours so that my last dose will be 8-10 hours before test. I have never had a test that was not skewed (by then unknown factors). This will be the 1st unadulterated test! I hope it gets to the overseas test in time.
I will post when I know more. And depending on any news - I may post all previous skewed results that I only managed to obtain in last 3 years. x
Great to hear from you - only a couple of days ago I was wondering what had happened to you and how you were getting on. And brilliant news that you have been able to get your hands on a fingerprick test now that a new 'posts to Jersey' lab test is available. This is incredible progress for you and will free you from the useless GP testing and refusal to give you results. I'm not sure what instructions you will have re how to do the fingerprick test but so that you don't fall foul of the same problems I had the last time I did one [which if you remember was rendered null and void and I still have to re-do it] Medichecks has a video on its website about how to do the test which is worth watching - I would imagine that even if your kit is from a different company the principles of how to do a fingerprick test are likely the same.
You are like me in so far as that the first medichecks thyroid test was the first one I had done "unadulterated" - all the testing done by my GP was when I was on B vits and they never told me to stop - and all the tests were done mid-late afternoon without fasting. No wonder they never thought I had anything other than "normal" thyroid results. So hopefully if all goes well you will get accurate results [possib late this week/early next week] which you can post on here for advice and info. Good luck with test - hope all goes well with it!! and remember to start a new post with your results. I'll PM you when I have more time.
Hi Redlester, great to hear from you too! I have been wondering how you have been getting on.By strange coincidence I have just come across a video from medichecks on how to do a finger prick test, posted by seasidesusie? - I think.
Your experiences with Gp's & testing are eerily familiar, & remind me of - where I had annual non fasting tests. Several coffee's with milk in morning, high dose "skin, hair, & nails b vits up till afternoon of test. Only thing I missed was occasional food, & then only when I had cholesterol test. Being told I had high cholesterol & high BP every year/test = of course being told to cut out red meat, alchohol, cigarettes,glue sniffing, crack cocaine etc, (I didn't do any of that) but GP's appear to link rundown -ness, stress hormones, frequent shingles & high cholesterol with hedonism!
It's clear that we 'patients' are TOO 'patient' & paying the price for ignorant brain washed 'Dr's'. I hope & pray that the (albeit limited) options you have in UK lead to an improvement. I just wish I could get the tests I was told I needed, like scans & growth hormone, but without local private testing clinic & the 'cover up & cull' culture here, that's not possible.
I hope you are improving, your experience & advice are very encouraging. Best wishes.
"glue sniffing, crack cocaine etc, (I didn't do any of that) but GP's appear to link rundown -ness, stress hormones, frequent shingles & high cholesterol with hedonism!" - you are making me laugh Jenny - yep they are indeed so quick to blame the patients for their poor health and the lectures I have had to listen to from the "all knowing" (tongue wedged very firmly in my cheek at this point) GP's would beggar belief. How did fingerprick test go? when do you expect to get results?
Hi! I just got the results about an hour ago. I had better post the results as this is the 1st test Iv'e had done without (possible) Biotin interference, (or glue sniffing lol!)
Definitely, with all details you shared ideally you need a smart doctor who would dig into it and create a personalised treatment for you. It's not very likely to happen in current pandemic situation...
Have you came across Medical Medium books? If you remove medium part, his advices are quite good and help to improve health especially if people have multiple chronic conditions.
Also have a look at Dr Hyman and Dr Tom O'Bryan books - they are easy to read and very informative.
I have tried many times to obtain anti body tests, but always the lab refused to do them. When I was young I was often accused by Dr's of being too 'stressed' apparently my immune system was knackered, & it was assumed that I was stressing myself. If I did read books on immune damage, I might get even more frustrated, as we don't have facilities here to get the big - or any picture - or put things right.
Anthony William Coviello, known professionally as Anthony William or the Medical Medium, is a medium who offers pseudoscientific medical and health advice based on alleged communication with a spirit. He authors books as well as offers advice online on such forums as Gwyneth Paltrow's Goop column and his own website. William claims that the Epstein-Barr virus is responsible for multiple ailments, including cancer. He is the self-proclaimed originator of the lemon juice in water morning detox as well as the celery juice fad, which he claims can offer many health benefits that are not scientifically proven.
It is very easy to assemble some valid things and mix them with other things and make it look feasible.
I said ignore Medium part - his nutrition advice is in line with functional medicine. FYI, lemon water is well known for its detox properties and I was drinking celery smoothies well before his book was published.
He is not alone or unique - and there are many cases when people switched to natural food and improved their health and eliminated many chronic conditions that they gained from eating highly processed and polluted food.
In my view, if someone is willing to write such stuff as he does, it is a huge warning not to trust anything he writes.
If I want functional medicine advice, I'd go to functional medicine specialists. Not to someone who has copied some of their stuff and mixed in with some of his own.
Not everyone has an opportunity to go to functional medicine specialists (I mean good one with years of experience) - but there are varieties of books and publications, not just Anthony Williams. The approach is the same.
Thanks Tuscansun. I'm not ordering the test, there are too many hidden charges for people in Jersey, + they lie about it. it's cheaper to go to local GP, & who knows,maybe they would include a ferritin test?
I think you should try to get tested via GP - TSH, free T3, free T4, antibodies, vitamins. Also I would ask to check your cortisol and adrenal level - you can feel exhausted due to adrenal burnout.
Do you have any allergies?
I cannot spend much time searching for links to support my POV regarding finger blood test for thyroid, and just quickly found just this on British Thyroid Foundation website where they are talking about finger-prick blood tests on btf-thyroid.org/myths-and-m....
Even vein tests are not fully reliable as there are many interferences which affect test result interpretation academic.oup.com/edrv/artic...
Also, I recall, when I had my thyroid blood test done, it didn't make any sense as everything was extremely low: TSH, T3 and T4 and I was thinking about testing privately. Around that time I had a business meeting with a guy (with PhD in Immunoassay) on completely different topic. As his background in medical testing, I mentioned my "mysterious" test results and mentioned that I wanted to do finger-prick privately. He advised me not to do as it can be misleading.
Thank you Tuscansun for those links, I lost all my research more than once when my PC repeatedly disappeared all my links.
I should point out that it is not possible to obtain "private means of diagnosis" here. We have no NHS, & DR's do not test or treat. My eyesight is failing now, which is another complication, but i have saved these links you have provided. Like you - I had everything - low TSH, Ft3 & 4, & all they go by here is TSH - this in spite of many recently hinted at - decades of high TSH.
When I am well enough to obtain my medical records, I will have a better picture.
I hope you were able to use the advice that you received from phD to secure treatment, & that you have the resources to circumvent the lies of the so called medical profession as it is "taught" - wherever you are living.
I will be feeling well enough to proceed soon. Thank you so much ! take care.x
Good luck and hope you can sort it out and heal yourself quickly.
In my case I got couple of other tests which were better but borderline - however, I decided not to take hormones (though I was not offered either) - and try to improve my symptoms which I did at the end.
My symptoms were brain fog, fatigue, very brittle hair and nails. I was prescribed Vagifem which magically lifted my brain fog over the night. Started taking D in oil and Q10. My tiredness gone, my hair and nails look much better - I receive complements which is ironic.
Also, I noticed since I started my neck massage (for pure aesthetics reason) that I feel like I have more energy
I have been taking Q10 for 2-3 years, on advice of a very intelligent friend, but not as much lately, as distracted by iron/T3. I will step the Q10 up to to every day again. A few weeks ago I obtained a vitamin D3/k2 oil gizmo. I would love to be in the happy position of UK residents, whereby I could explore! like you brain fog#1, #2 fatigue #3
brittle hair & nails, breaking off below nail bed, & hair forming hairball knots . The fasting of biotin to prepare for GP visits - which I was too ill to attend! showed that when I stopped the biotin -( now that I know that the high dose interferes with serum assays) seemed to cause this? I don't know, it may be coincidence, but I don't seem to do well without biotin, & nails are only just getting over infection from breaking across quick - now that I have resumed biotin.
I keep forgetting that I have D3/K2 oil, & that I was diagnosed as hypocalcaemic/D3 deficient, so have not taken it every night, I must be more vigilant!
I will give try to give myself neck massages & now also look into Vagifem, which Iv'e never heard of.
I joined 1 too, a couple of years ago. I felt like an interloping fraud though, as everyone there had alopecia. The GP that told me that I needed endocrinologist & iron panel came by & reiterated what he told me. Did your hair grow back?
Yes it did but it is not as thick as it once was but I did have extremely thick hair to start with. I have lost about 50% of my hair twice now and it has been growing back for the second time for about a year now. At one point I was losing hundreds a day and now I lose about 3. I took a plastic bag of the hair I had lost to show my GP who was a balding man with a shaved head. His reply "It is only hair" I then told him what I thought about his reply because it clearly didn't matter to him because he shaved his head etc. I then paid £150 to see a dermatologist and she told me I had female pattern balding and to use Regaine. What she and my GP didn't spot was my TSH was suppressed at 0.002 and I had hyperthyroid and this went on for about 2 years. As you can imagine I looked dreadful by then and I was very thin and some of my nails had dropped off as well. Mine was caused by my thyroid levels and low ferritin and low vitamin D. This was over 10 years ago and I feel like asking the dermatologist for my money back because I still have a full head of hair even though she said I would end up wearing a wig. What I do know is how distressing this can be and I think once you remove the trigger that is causing your hair loss it will grow back. Hair is quick to fall out and slow to grow back I'm afraid.
OMG! you sound just like me - except I could not get a dermo appt, as my probs were secondary . I also had thyrotoxicosis when young, followed by severe vitamin D deficiency & hypocalcaemia, & recently discovered long standing hypothyroidism. Still don't know if this was part of hashimoto's - or graves, followed by hypo, but I have been told by many "private Dr's" that it is all down to (historical) "hormones & low iron" as cause. No printouts. I also asked & received fro then GP a diagnosis of severe secondary hyperparathyroidism, by phone call, & expensive - to me - bone tests. However these have not been treated by Dr's or acknowledged officially. waste of my savings! I was told that under Jersey rules that I was too young to receive treatment. I had bone problems as a child too. That was "treated" with sleeping pills at age 12!
There are a number of possible reasons for hair loss. Lack of certain nutrients is one factor, as many have said. But then you need to dig down and work out WHY you are deficient, assuming you are eating a diet that contains enough.
Most, if not all, people with Hashimoto's have poor gut function. They are also highly likely to have low stomach acid. A high percentage of the population have low stomach acid and this is the starting point for good absorption and digestion as well as helping to protect issues with infections such as H Pylori.
Nutrients that may be low if stomach acid is low include B12 and iron. If stomach acid is low you will also not break down proteins - especially those in meat - very easily. In addition to this, stomach acid starts a 'chain reaction' and promotes the release of digestive enzymes further down the line. So the first thing anyone with any chronic condition should be looking at is optimising digestion.
Candida is another thing that often goes hand in hand with hypothyroidism, I have noticed. This can also cause hair loss.
I know I must sound like a broken record (having just said the same to another person) but I would see a good nutritional therapist who will do a detailed analysis of all your symptoms and assess which systems are under stress and what your priorities are. For years I suffered with all sorts of issues and ended up studying nutritional therapy myself. It really is an eye opener and has been helpful to me on a personal level to help fill in some of the gaps left by conventional medicine. I have also seen amazing transformations in clinics.
I agree with everything you have said, & no, you do NOT sound like a broken record!
I definitely had candida in 2010/11, 4 lots of antibiotics in 2010, while living on icecream! but I dared not mention my theory to then GP. She told me I had a "wheat allergy". There are no nutritionists here in Jersey, just sunshine.
I am pleased & encouraged that you have seen your research paying off. You are a blessing to this site!
Hi Jenny. I used to vidit Guernsey a lot and have been to Jersey a couple of times so I’ve had a bit of a chat with people when they have posted. One suggestion I made was to go to France in a day trip though I realise you can’t do that but main purpose for suggesting that was to get thyroid patients talking together and swapping experiences etc. Ultimately that may well instil confidence etc. and better doctor/patient experiences. I do appreciate though there could well be limited resources. I don’t know what is possible for you personally but may be something to think about.
I cannot go to France, but I know people who's lives were saved by going there, but they were millionaires. The best thing I can do personally is to find a Lawyer to see if I can obtain medical records. That is the main reason why I am attempting to find the quickest means of getting the energy & cognitive functionality to get to the hidden clues in my records.
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Can low T4 when taking NDT cause hair loss ? 
Extreme hair loss and told to reduce levo
Newbie on the edge trying to interpret results.
Latest thyroid results after splitting dose the day before - NDT
