I am not feeling at all well. I wanted to scan & post results, but can't. I went to endo last week. He tricked me into all sorts. I feel too ill to go into details, so I will keep it short. I had to gate crash GP at £50 to bully her into taking blood, she claimed that endo had not informed her that I was to get bloods from her. I took a double dose of both t3 & metavive the day b4 - by mistake. GP & I are now no longer together.Both Dr's have ganged up on me & so I am without a DR, & second guessing where I stand with my black market self care - for what looks like either low isolated tsh, or pituitary/hypothalamic dysfunction.
I was supposed to have pituitary tests, but it looks like either they were not done - or they are hiding results or they have thrown blood away? I was advised by a private counsellor to gatecrash phlebotomy today. I knew the nurse - so was able to get the blood draw. But after I eat I feel so ill, & then I have to sleep. I don't know if I can finish this post tonite, as I have eaten.
I have not taken any form of thyroid meds for a week as of today, BTW. This test that came today from x gp is from last week that day (on twice the usual dose)
I am only including those that are out of range & thyroid numbers - for now.
Cholesterol 5.6 H mmolL (<5.0 )
TSH 0.13 L mU/l ( 0.50 - 5.00 )
Free Thyroxine 7.0 L pmol/l (10.0 - 25.0 )
I hope to explain & scan in the rest tomorrow.
Thanks for looking.
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Jenny583
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Can't comment on these results because there is no fT3. What dose of L-T3 are you taking?
Two years ago you posted these results (I assume not taking anything then):
TSH 0.35 L mU/l ( 0.50 - 5.00 )
free T4 10.2 pmol/l ( 10.0 - 25.0 )
Free T3 4.5 pmol/L (4.3 - 8.1 )
Clearly the TSH is too low for your combined fT3 and fT4. This may not be central hypothyroidism as in actual damage to the pituitary (it could be a mild form). This sort of inappropriately low TSH can be caused by various factors including depression, very low calorie diet, severe chronic illness or a previous period of hyperthyroidism. I call this subnormal TSH secretion to distinguish it from central hypothyroidsism. It can have profound effects, not only are both fT3 and fT4 low but the low TSH reduces T4 to T3 conversin in vital organs such as the brain.
I wouldn't take metavive as it is not prescription grade and could have varying amounts of hormone. I would expect you to be better with some L-T3.
I assume feeling ill after eating is a recent problem? If you have been unable to eat sufficient calories for some time it will affect your TSH and thyroid.
Just noticed your first post 'I had severe thyrotoxicosis thoughout my youth'. This could cause your low TSH, thyrotoxicosis can 'down-regulate the hypothalamic pituitary thryoid axis' meaning your TSH does not respond adequately when fT3 or fT4 falls. This has the consequences I outlined above, low overall hormone levels and in particular low T3 levels in organs such as the brain that relie on taking in T4 and converting it to T3. It is definitely worth trying very hard to get the pituitary tests, even if you have to make up with the doctors. The pituitary is sometimes checked with a TRH stimulation test, an injection of TRH to see if it stimulates sufficient TSH secretion. Just doing this test sometimes 'resets the axis', the pituitary starts to secrete the amount of TSH it should.
You are very knowledgable and so clever . Thankyou for sharing all your knowledge with us all . You should be a doctor . You would be bloody good at it
Afraid I wouldn't too impatient and don't have the interpersonal skills. I stick to what I can do which is logical reasoning. There are lots of patients organising support groups, making contacts and giving emotional support. I'm rubbish at that stuff so I think we each need to play to our strengths and together we might make progress. Thanks for the kind comments.
Sorry jimh111, I felt very poorly last night, I did a lot of running around yesterday. The FT3 was 6.0 pmol/L (4.3 - 8.1 ) I took a double dose of T3 day B4, so I expected it to be a lot more than that. Especially as endo said all my results were over range! Last dose was 10 hours B4 draw.
I agree with all you say, & even told the endo a similar theory to what you say, he accused me of telling him how to do his job, & asked how long I trained for, & bragged that he trained for 10 years. The more I challenge his lies - the more he doubles down, as a result I am stuck with him, & no answer as to why I feel like death in the evenings, or why I am so cognitively impaired - this last (the senility) - has resulted in massive expense, with the result that I am almost broke.
So I can't make up with anyone, they don't want to know me. There is only 1 clinic here, & I always get the euthanasist (as I call him) - (whatever consultants name is on the form). He's like a shapeshifting alien that only I can see ,lol!
Unlike in UK we don't have option of 2nd opinion here. We can get a very expensive visiting dermatologist to tell us that our skin problems are likely caused by endocrine dysfunction, but that we already know, & if we tell Dr death that every private DR tells us that we look to have xyz we get blacklisted. Others opinions - however well informed actually make matters worse. Only the GP we are registered with can refer or treat, & only the death dealing "specialist" decides if there is such a thing as secondary hypo or not, & if they decide that no such thing exists in Jersey - then it doesn't, & so the patient is deliberately suppressing the tsh by self medicating. End of.
Yes, the evening exhaustion after eating is recent. Though I had same thing in 2011. Over £1000 spent on various GP's who told me high BP only, I can't take propranolol though - as it makes me ill. I think it is extreme stress, I took on too many battles over the year & year B4.
I am my own worst enemy. But that could reflect personality changes seen in those with growth hormone defficiency ? And yes, I have severe chronic depression, & cannot take antiD's, again, they make me ill.
I spent most of my savings on private counsellor over last 6 months, I was told that this would be paid for by the government of Jersey - as Gov caused my C-ptsd. But it was yet another trick, so I am stuck in bed, broke, with no quack. I will resume t3 today, & try & scan & post up the printouts.
Depression can lower TSH and cause hypothyroidism and hypothyroidism causes depression. What dose of L-T3 are you on. Often antidepressants are 'referactory' (don't work) in hypothyroidism. Try splitting your T3 so you take half at bedtime, I find the bedtime dose improves sleep quality and cognitive function during the day.
I get fed up when builders, doctors or whatever tell me they have x years experience, my immediate thought is it's taken so long for you to get to this hopeless stage. Take someone assertive with you to future appointments. Sorry I can't offer more advice.
Why is it it that so called dr's are the way they are? If you were a dr, I suspect that you would be either assassinated as a dangerous maverick - or more likely walk out on the 1st day!
The problem of having a lifetime of depression is simply that - there is no one to take along,here in Jersey, but it would make no difference if there were. My next appt with endo is in May, but I will not have access to results of phlebotomy, as they told me that they had not received any orders from endo!
So going without T3 in prep for phlebotomy was a waste of time.
I hate that these posts I write are more & more like a "pre post mortem", but I can't bear the thought of my destruction being hidden from the world. You and others though, have kept me going, I have to find a solution before I give up, but it would have to be very different to those of a uk resident.
You have 0 to be sorry for, as others have commented, you are very helpful & supportive. Your advice is spot on, & for those in UK - a life saver.
I have not decided what dose to take yet, but it will be split, but I must try to find a pill cutter.
You can snap the tablets between fingers and thumbs, they normally split quite evenly. Alternatively if you have a sharp knife you can place the tablet on the table / board with the knife tip ahead of it and slowly rotate the knife down onto the tablet. Splitting between forefingers and thumbs is probably the best way.
Jenny583, have you been buying and dosing your own thyroid hormone? Many of us here do the same, and it can definitely feel like stepping into the criminal underworld to do shady practices.
But I think it's important to remember that we're doing this to try and get better, and to be more kind and caring with ourselves than doctors are willing to do. The best way to do this, in my view, is to be systematic and professional in the way we manage our dosing, blood tests and results.
It is quite easy to do a better job than doctors at this! The basic outline is to stick on a dose you think might be right for you for 6 weeks, then take a blood test if you can, look at all the records you've made and symptoms you've had over that time, and adjust the dose by 25mcg of T4 or 6-10mcg of T3. Keep on going like that until you get some improvement.
One of the great things about self medicating is not having to deal with all the nonsense and trickery from doctors, pharmacists, etc. Just this week I had a friend in my kitchen in tears because a nurse at her practice is withholding her prescription for some petty admin reason, and just doesn't care that my friend will end up getting sick. It's so inhumane and just weird. I had the comfort of knowing I have a years supply of my own hormone in the house!
Hi, yes I have be indulging in criminal activities for around 2.5 years now, ever since I discovered the alien invasion of the Jersey medical "authorities". We don't really have a NHS here, & as it is a small bank/tax haven - there is no pretence to democracy & so private businesses like Dentists & Dr's not only very expensive, but also a law unto themselves. The N I C E guidelines are routinely ignored.
In an ideal world we could be magically transported to the UK for private testing, & treatment, but that only happens for witnessed head injuries like RTA's resulting in coma, or for cancer patients, (the minority that get diagnosed, that is.
This forum has saved my life, & it really is a Godsend. It does show up the so called medical profession for what they are though, a bunch of useless venal brainwashed (place appropriate expletives here).
I am pleased you have reminded me of the importance of professional self care though, I have been rather lax with that 1. For example I still havn't tried to source a pill cutter.
As my TSH is almost non existent I may just as well try T3 only - If I can find a way of getting a precise dose. But it looks like I will have to go by how I feel.
I stopped taking T3 on Wednesday as I felt so ill, with sky high BP & palpitations, pretty sure it's stress though, but I couldn,t take that chance, without knowing if I had gone over range.
I had severe thyrotoxicosis when young, it was hellish. I had to retire on my 23rd birthday, so no more career or life, all because GP woulnt treat me unless I gave up my career. He still waited until I started cleaning toilets in new year b4 he would let me have carmimazole & propranolol.
The development firm I had worked for went under. They could not replace me. The wonderful women that worked there who told me what was wrong with me! all lost their jobs, as did the small bunch of useless tosser engineers.
For pituitary, you'd need a serum cortisol test, and a short synacthen test - if those were abnormal, you'd need an MRI and possibly an insulin stress test. Depending on what you were taking at the time, could be central hypo, but if you were taking something with T3 in it, all bets are off. You'd do better to order tests from medichecks or Blue Horizon and get endo to order other tests at hospital (or get private endo)
Thanks, yes. I had a short synacthen test last year. But I had had a very stressful day/week, & don't know if that & the fact I was self medicating may have influenced the result.
I don't mind that the bets are off, & that I will have to source meds on black market, but the problem
is that -A. I feel very ill, & now have no Dr.
B. A head injury may have triggered pituitary dysfunction.
C. My symptoms & lack of quality of life & dementia like pattern looks very like growth hormone difficiency.
D. The endo that freaked at my self care & absent tsh consistently lied about everything & presumed that as well as being stupid- that I could not read either. (I will try & scan the test that I made him print out soon). He said that my ft4 was over range (on metavive), when I can see that it is only 15.5 in a range of 10 -25. The GP believed him, so now I have no GP.
E. I have no access to blood tests.
F. I need to put my affairs in order, & can't because I am stuck in bed, & every time I eat I get a bad neuro reaction & have to sleep for 2 hours day or night.
And last but not least - before I die - I wan't to expose the euthanasia that is now rampant in Jersey. I lost 2 friends recently, & a 3rd had to return to UK, she had lived here for 45 years, & had 50 friends here. Last I heard she had a dislocated shoulder, a broken leg, a septic knee. In short she was armless & legless, just 1 of many victims of the refusal to continue thyroid treatment!
Unlike in UK we cannot access results, insist on treatment, ensure our records remain in existence, or make killer medics accountable. I had to pay £50 every month to pick up 1 prescription for just hrt, I was not allowed to speak, I was not asked any questions, they only prescribed a form of hrt that has manufacturing problems - leaving me without any meds for weeks at a time. I told gp that I would save 100£s each year by getting hrt on black market Like I do with metavive & tyromel.
If there were a blood testing facility here like in UK - I would treat & moniter my levels, then I wouldnt be veering between pooling iron in blood when I take iron - & anaemia when I don't. I will now have to try & find out if ANY GP will take me on, & help me, as they are like a collective mafia here.
Metavive is not black market as it is a supplement not a medicine. Can you not use a friend's address in the UK or France to register and get better treatment?
The endo lied, & said that I was taking t3 when I was only taking metavive (high dose) he has put on records that I had been buying t3 for 2 years! I had not even started taking bought t3 at that point. Whatever I take - I have never got to half way in range, but the endo still puts it out as over range, these dr's come from uk. I believe that they are imported for the specific purpose of culling the weak, & I don't care how paranoid that sounds.
No, there is no way of registering in UK, & my friends are departed. I am all alone. Jersey is not part of the UK, & is in no way accountable to anyone.
OK Im still too poorly get the new printer set up, so I will add stuff for now by hand.
I noticed on my last & final printout that my D3 level is 120. This in spite of buying high dose D3, in addition to the calcichew.
I had undiagnosed secondary hyperparathyroidism a few years ago. I have the same symptoms that I had then. I think it may be the parathyroid hormones that are making me ill?
Oestradiol is also very low at 24.
Even on prescribed calcichew forte my calcium was always below range. Oddly it is now in range, though only just.
BTW the 'endocrinologist' that convinced the ex GP that I had had the pituitary function test blood draw analysed clearly did not keep the blood tests - as the only pituitary hormone that exists on the computer printout is - Follicle stimulating Hormone! which in a woman of 62 is just taking the piss.
The only other test showing are U's & E's, that's all I ever got - anyway. In other words they are deliberately obscuring the symptoms, & telling all & sundry that I am suppressing TSH by buying "sports steroids" on internet, & that I am fit & well, & my inability to work for 30 years is down to laziness & hypochondria. That's what the corona would be told to say.
Incidently they murdered my husband by throwing blood test results away, after poisoning him with banned highly toxic drugs like Opron, & then adding more toxic cheap drugs to continue to undermine his already frail state. I was told this by moles working in lab, among others.
As for the - so called "full iron panel" - all there is - iron.
And no coeliac test, I poisoned myself with a high gluten diet for months in preparation b4 I finally got the blood draw, and all for 0. The tests ordered I scanned them B4 I took them to lab, so I have documentary proof that they were ordered.
So I cannot afford to buy gluten free food without the vouchers, (which I haven,t had for over a year) & I can't find out how much of my total incapacity is down to coeliac, hyperparathyroidism, secondary hypo, absent tsh, iron deficiency, depression, ptsd, or possible pituitary failure! BTW I put on 2 stone in last few months.
I think the best thing I can do is ask the one & only non corrupt lawyer in Jersey if he can help?
Hi Jenny583, You could try cutting out carbs and trying a diet of protein and fats for a couple of days to see if it relieves any of the symptoms you get after eating.
It's funny you should say that, I was thinking exactly same thing! passed out on Sunday & had weird dreams about cooked vegetables, I was really starving, & couldn't get enough of them. The rest of the dream I was too exhausted to move or speak or open my eyes.
I appeared to be in some kind of 'home for the bewildered'. Before I passed out I felt too exhausted to move. When I awoke I felt extremely hungry, with a crazy craving for peas & carrots!
Though I was starving hungry, I was too week to go to kitchen & cook. I have unripe avocado's & celery, also bananas. I have been craving vegetables for last week, I get extremely hungry very fast, body telling me something?
I will get veg & avoid junk from now on. Coconut oil arrived rancid, so cancelled subscription. Will have to drink veg oil?
I may even give up smoking drinking & glue sniffing. Ha Ha.
Interesting dream, I’d listen to what your body is telling you! I’ve found with myself that the key to a good day is balancing blood sugars. I’m not diabetic but my food intolerances really mess with levels causing all sorts of scary symptoms. I think you should concentrate on balancing your blood sugar, could really turn things around. Let me know how you get on!
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