What test is this?: I will be seeing new GP on... - Thyroid UK

Thyroid UK
108,221 members125,586 posts

What test is this?

Jenny583
Jenny583

I will be seeing new GP on Wednesday 4 weeks after 1st visit. She had phoned to say that I will be getting the Hashimoto test, but I came across a printout from the previous GP dated 23-Oct-2018,just prior to this - (I was advised by Thyroid UK to ask for autoimmune thyroiditis) test. This I did, the result below shows what may be this test, could someone enlighten me please? Thanks.

<1.0 IU/ml ( 0 - 6 )

Comments Anti -thyroid peroxidase antibodies negative.

TTG(R) Anti -thyroid abs (R) 13:54

On the same date - the following ; FT4 11.7 pmol/l ( 10.0 - 25.0 )

FT3 4.3 pmol/L ( 4.3 - 8.1 ) There doesn't appear to be a tsh on this report, but in line with other tests - would no doubt be low.

I will show new GP where I am coming from though.

83 Replies
oldestnewest
helvella
helvellaAdministrator

You would expect TSH to be high given your low FT4 and FT3 results.

TSH rises when we do not have enough thyroid hormone - the pituitary tries to signal to the thyroid that more thyroid hormone is required.

Jenny583
Jenny583
in reply to helvella

Yes you are right - but my tsh & ft3 & 4 went down down down. Gps ignored the physical & mental brain fog & insisted that I was thyrotoxic & in dire need of a thyroidectomy, based solely on my low & lowering tsh .

But my t3 & 4 were on the floor. And the only reason That the t3 & t4 was in range was likely because I was taking high dose biotin , & yet I was senile & with cfs...

SlowDragon
SlowDragonAdministrator
in reply to Jenny583

High dose biotin FALSELY AFFECTS BLOOD TESTS

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

No Medication or dose adjustments should be made based on any blood test results when taking biotin

Jenny583
Jenny583
in reply to SlowDragon

I know. I learned that in 20017, 1 day after I was thrown out of surgery with a flea in my ear & a bill for £57 + threats of thyroidectomy + a throwaway supposition of - (without tests) of CFS .

I have just wasted precious time trying to find blood test result from that month, silly brain dead me! of course there was no test - or prescription - or advice - or referral - just another traumatic 'f off' hypochondriac' & don't come back - or your 1/2 your measly income PW GP bill that you paid to be trashed will be doubled ,until you acknowledge that your 4 weeks ago test ( for T3 - B4 this dressing down) was not low, but rather graves disease with proof of low TSH or else you will be forcibly departed from your thyroid gland, & BTW your records only go back 10 years....

Jenny583
Jenny583
in reply to SlowDragon

I learned of the biotin factor in 2017, the day after I was tested - too late, now paying the price - again too late.

Jenny583
Jenny583
in reply to SlowDragon

I told Dr's that biotin affects results, but they took no notice, I think the fact that I now leave off a week B4 test is why the results are lower now, but if a test is unexpectedly sprung on me when I have taken either biotin or t3 then I am surprised to find that t4 is even lower than B4 in spite of this, strange.

Jenny583
Jenny583
in reply to SlowDragon

Thank you! I won't need to wade through my PC to try & find these articles now to print them off for new GP in case she raises an eyebrow at past test results.

I notice that the 1st article mentions a falsely high B12 result. I had a B12 over range result in 12/01/2017, which is strange as I was told that I needed to buy B12, as I was "run down". & yet I think I was only taking a normal dose of B12 at time of test , And TSH was in range, 108 - in spite of hypo symptoms. I think I was taking biotin for my ridged & splitting nails at that time...

porter5
porter5
in reply to Jenny583

How reliable are medical tests? Are the values correct?

Most people are deficient in magnesium but the blood test shows normal?

Whats the explanation? The amount in the blood is only 1% of the total

body values. So one could have normal blood values and very depleted heart

values. A whole body test is available in the US but who knows how long

it will be before it reaches here. What to do? The RDI is 400mg perday

it is argued that this is barely enough and that around 650 mg would be better.

and it should be balanced with calcium.

So what type of magnesium? what dose?

There are about 18 different types. The most commonly used is magnesium oxide

however it is very poorly absorbed. at 4%. so a 500mg tablet would only give you

20mg. Magnesium citrate is a good option as is magnesium sulphate but be careful

not to take too much it can cause diarrhea. Magnesium Chloride applied to the

skin absorbs well best taken after a bath because it takes a while to dry off.

To improve absorption vitamin B6 50mg works well. Nutra vita have a 440mg from Amazon which I find works well. There's a bit of trial and error in this. Magnesium is an essential mineral you must have. So you could start with one tablet a day and then try two see how it works for you with vitamin B6 50mg.

Dr Caroline Dean's book The Magnesium Miracle is well worth a read.

As for mental fog. That is likely aluminum in the brain. Prof Oxley, writes on this

and his remedy is to drink Fiji water every day for three months. I found that worked when I started to become forgetful. It was amazing. The fatigue could be many things.

But could well be hormones out of balance due to endocrine disruptors. Very widespread . Can affect any organ including the thyroid,not recognised by GPs .

A wide range of common illnesses are caused by deficiencies due to poor soil quality

and resulting deficiencies in the food. Plus poor dietary choices ie overloading with sugar, etc. Good luck with finding a solution.

Jenny583
Jenny583
in reply to porter5

Thank you porter5! When I was very ill, I read of the importance of magnesium, I started to buy it, & the restless legs & twitching/cramps eased off a lot.

I am currently buying magnesium malate, I only take a half dose, as I have a lot of expenses, but I am not bothered by the feet/leg problems now.

I don't know if I have aluminium brain, but I'm pretty sure my Mother had that, she took aluminium for chronic indigestion. I did not have brain fog B4 I took carbimazole for thyrotoxicosis, so it is probably hormones with me.

if I get indigestion I take ginger root. I was addicted to sugar as I could not afford proper food, I now compromise, but I do seem more with it if I eat things like avocado.

I would have been exposed to a lot of endocrine disrupters, when I was trying to stay warm, & keep ants & weeds at bay.

Thanks, I will look into the fiji water thing - not heard of that.

My Mum was told off by her GP for having low B6, & she was told that she had alzheimers. When she was complaining of symptoms of cancer she was told off for having severe pernicious anaemia, severe osteoporosis, severe hypothyroisism, lack of intrinsic factor & a whole host of ailments that she had failed to get them to take notice of. They started to allow her B12 injections each month.

This was used as an excuse to not allow her a biopsy, that would have revealed the cancer.

It was too late for her, but she found herself with 14 different meds for the various ailments, but she could not swallow them as the cancer prevented her from swallowing.

The irony.

porter5
porter5
in reply to Jenny583

Hi Jenny,

Sorry to read of your difficulties.

GPs have very little idea of what drugs contain.

Ben Goldacre is a doctor and was health correspondent

for the Guardian. In" Bad Pharma", a book he wrote about

pharmaceutical companies and the drugs they supply.

he said doctors can't rely on the information drug

companies supply. There is no one who knows the

effects of 2 let alone 12 drugs in combination.

Doctors are only coming around to realising that food

interacts with drugs and can neutralise a drug

making it useless,amplify its effect making it fatal,

sometimes you see this info listed in the leaflets insert.

But you have to make your own judgement about

what you want to do. Don't allow doctors to steam

roller you into drugs for their benefit.

Best thing if you could manage it would be organic

food you prepare yourself....difficult I know.

Anyhow best of luck,

porter5
porter5
in reply to porter5

Re : aluminum in the brain and dementia,alzheimers...Prof Exley wrote about this and provided a number of studies which show people had off the chart levels in their brain and as I said he proposed Fiji water which has a very fine type of silica in it that binds to the aluminum and allows it to be removed from the brain. One of the things he mentioned as causing high aluminum was vaccines..so you can imagine he is not very popular but he is an expert in aluminum with 40 years experience.

Jenny583
Jenny583
in reply to porter5

The whole vaccine debacle has now become a political tool, & even a weapon. I would not have a vaccine, as I don't trust big pharma. I will now look at the fiji water, as my brain has just shrivelled up again.

Jenny583
Jenny583
in reply to porter5

Thank you. I will heed your kind words, & look into this book too.

porter5
porter5
in reply to Jenny583

Aluminium DOES cause Alzheimer's: (Headline from the Daily Mail tells the story)

Jenny583
Jenny583
in reply to porter5

My Mum who died in 2001, We were always warning her about aluminium, as she took indigestion remedies made of aluminium in massive doses, I think that's what made her confused. She also had anaemia.

I have just noted that the new GP has done the ferritin test. The previous GP never did it though she always said she would, my transferrin saturation levels were always under range though so I suspected the ferritin would have been too.

ferritin 47 (8 - 2005) Maybe that's why I feel like death?

porter5
porter5
in reply to Jenny583

Adele Davis microbiologist, and nutritionist.(sold 10.5 million books)

When persons with underactive thyroid were given 4milligrams of iodine and

600 units of vitamin E the amount of iodine taken up by the gland and the quantities

Of thyroid hormones in the blood each increased almost immediately and markedly.

Because the thyroid gland controls the speed at which all body activities occur,

An under supply of thyroid hormone results in fatigue, lethargy, a feeling of coldness,

Slowed pulse, low blood pressure, and a tendency to gain weight on few calories.

Some foods can prevent iodine from reaching the blood, like peanuts ,soyflour, and

Vegetables of the cabbage family, and thus increase iodine requirement.

Four milligrams of iodine daily the amount supplied by a teaspoon of kelp can

Correct thyroid abnormalities..

Also mentioned in her book is iodised salt. Cerebos is an iodised salt available from

At £1 and Sainsbury

How will you increase your ferritin levels?

Jenny583
Jenny583
in reply to porter5

Thank. You are very well informed! I started taking iron pills a couple of days ago.

<1.0 IU/ml ( 0 - 6 )

Comments Anti -thyroid peroxidase antibodies negative.

So, the <1.0 applies to a TPOab test (Thyroid Peroxidase antibodies)? If so, yes, that is the one that the NHS use for Hashi's. There is another one, Thyroglobulin antibodies, that the NHS don't test for, that could indicate Hashi's if it's very high.

But, the thing about Hashi's antibodies is that you can't rule out Hashi's on the basis of one negative test. Antibodies fluctuate, so the next test could be positive. Plus the fact that not all Hashi's people ever have high antibodies. So, it's very difficult to prove a negative, in this case.

TTG(R) Anti -thyroid abs (R) 13:54

This test is for Coeliac disease. But, you don't seem to have a result.

On the same date - the following ; FT4 11.7 pmol/l ( 10.0 - 25.0 )

FT3 4.3 pmol/L ( 4.3 - 8.1 ) There doesn't appear to be a tsh on this report, but in line with other tests - would no doubt be low.

No, the TSH would usually be high with low FT4/3. It would be low with high FT4/3. :)

SlowDragon
SlowDragonAdministrator
in reply to greygoose

But test was unreliable as she was taking biotin

OK, but that doesn't affect the question I was answering about the identification of the antibody test. I was just explaining about the different tests, not commenting on the results. :)

Jenny583
Jenny583
in reply to greygoose

Yes You are right about the tsh t3/t4 ratio. But I had all the symptoms of hypo, plus the new GP confirmed that I was hypo for decades, (other GP's had covered this up). plus my tsh went down at the point when I received my 1st printout.

From the online research that I did - it would seem that I may have had the tsh facility damaged by over aggressive treatment for some kind of anti -thyrotoxic treatment when I was young, & this may possibly have damaged the pituitary or hypothalamic feedback mechanism, as a previous GP (around 15 years ago) upon finding my cholesterol & BP raised told me that she fully expected a thyroid failure in full swing. She assumed that I knew that I was hypo for decades. I didn't.

Apparently my thyroid had been failing for years. But there was no follow up, & I was not informed of this . Instead - I was forced to take BP medication & it was believed that (due to high cholesterol) - I was lying about my not eating red meat. BTW, the high cholesterol is back, but no one has mentioned it.

I was then sent to psychology for assessment for dementia in 2006, (my brain fog was off the scale!) but I was too young to undergo the test, so instead they made me undergo an IQ test, but my IQ was normal. I told them that My IQ was down by over 1 /3rd but I was dismissed as a liar, because they had not carried out the test themselves.

I believe that my tsh was all that GP's went by - at some point, & that GP's believed that because I had had thyrotoxicosis in past that it came back, & they wanted to rip out my thyroid on the basis that my TSH was going under range, yet they totally ignored the hypo symptoms. I also believe that over aggressive treatment for thyrotoxicosis invariably leads to either isolated TSH suppression & consequently thyroid depletion or pituitary or hypothalamic failure - or both. I base my hypothesis on medical publications by the official endocrinological authorities findings. I will attempt to post or paste these.- if necessary.

I cannot afford to have tests done that have been done in past, £65.50, so I need to ascertain if - now that I have been self prescribing via black market for past 2.5 years if I have endocrine failure or if I have auto immune disease, as I am not a DR & cannot tell a DR which it is. And the fact remains that despite paying big money on black market meds like thyroid supplements - my last T4 with previous GP (when I accidentally took double dose the night B 4 was TSH 0.13 mUl ) (0. 50 - 5.00 ) - and ft4 7.0 pmo/l ( 10.0 - 25.0 )

Don't think this looks like hashi's.

greygoose
greygoose
in reply to Jenny583

Well, that's all a bit confused, isn't it. You've obviously had some pretty terrible doctors in the past!

And the fact remains that despite paying big money on black market meds like thyroid supplements - my last T4 with previous GP (when I accidentally took double dose the night B 4 was TSH 0.13 mUl ) (0. 50 - 5.00 ) - and ft4 7.0 pmo/l ( 10.0 - 25.0 )

So, what exactly are these 'supplements' you've been buying on the 'black market'? Although, black market isn't the term I would use.

Taking a double dose of anything the night before a blood draw wouldn't have any effect on the TSH, because the TSH doesn't move that fast. And, if it were thyroid hormone you were taking, taking a double dose within the 24 hours before the blood draw would result in a high FT4 level, not a below range one.

I really don't think we have enough information to say whether it looks like Hashi's or not.

Jenny583
Jenny583
in reply to greygoose

I hear what you are saying. But this is Jersey not UK or some other country.

I cannot comment on what the rules or laws are in your country. The term used in Jersey for self medication is "black market". That is what the Dr's call it.

I'm sorry if that sounds negative but I don't have the option of getting to the bottom of what has crippled me all these years. I only know that the only advice is available from the likes of you greygoose, & I have always gone by that advice as far as I can.

I am taking metavive & 6mg of T3. I believe that running around & stress may have lowered my T4 in January.

The Endocrinologist that I have seen on 3 occasions accused me of driving down my TSH via hugh doses of "sports steroids" & then stopping B4 test with the resultant half life lingering suppressed TSH. Not true of course, but his word topped mine.

Result was that I had to change GP's & now have no access to blood results, & ? mark over my integrity. I will most likely have to try & buy my medical records & try to ascertain what the DR's are trying to cover up,

but it looks to me like central/secondary hypothyroidism. But the DR's here have never heard of that, so only recognise Hashis with high TSH, & my tests reveal low tsh & low t3 & t4.

BTW, I received a printout from new GP a few days ago.

Calcium is right on borders despite self medicated high dose - you name it.

I may need to buy more iron ? to try & get my hair back as - 1st proper ferritin test is -----47 ug/l (8- 2005)

This gp practice clearly does not believe in T3 as the following would indicate....

FT4 13.0 pmol /l ( 10.0 - 25.0 ) TSH ).10 L mu/l ( 0.50 - 5.00 )

It looks like extreme stress drives T3 & T4 down, but they are still waaaay too low at the best of times - in spite of low TSH.

greygoose
greygoose
in reply to Jenny583

I am taking metavive & 6mg of T3. I believe that running around & stress may have lowered my T4 in January.

Ah, ok, so in that case, your FT4 is going to be low, because of the T3. T3 will also lower your TSH. So, it would be impossible to know if you have Central Hypo. Do you not have any results at all from when you were not taking anything?

6 mcg T3 is a very tiny dose. How long have you been taking it? I don't know how much of either is contained in metavive, if any.

It sounds as if you're worse off in Jersey than in the UK, and I thought that was bad enough! But it doesn't sound as if you're going to get any help from doctors. If you can get hold of your past medical records, that would help to work out what's going on.

Jenny583
Jenny583
in reply to greygoose

Thank you Greygoose.

I can tell you that the very 1st printout that I received - the TSH test was 1.5, the next test was 1.08, then O.87 , all with (0.50 - 5.00) range, & 6 months apart. At that point I was given very old liothyorine by a friend to try, with marked difference in how I felt even though I was trialling just 5mg of 6 year old T3.

B4 self meds - last 2 tests were( t4 in range) on these 2 tests, but very low/ borderline, I am now below borderline - in spite of self prescribing, & TSH well below range.

I don't believe that I have ever had hashi's & for that reason I should bow out, as this forum is for hashi's sufferers.

greygoose
greygoose
in reply to Jenny583

No, no! This forum is not exclusively for Hashi's sufferers. Far from it. It is for all possible thyroid problems, and the problems they cause in the rest of the body. You're perfectly in your place here. :)

So, they did the first three test of just TSH? A TSH on its own tells us nothing, so we can't draw any conclusions from those numbers, I'm afraid. We would need to see FT4 and FT3 tested at the same time.

If you had primary hypo, where the problem is with the thyroid itself, you would have high TSH and low FT4/3.

If it's Central hypo, where the problem is with the pituitary or hypothalamus, you would have low FT4/3 and low/low in-range TSH. But, you would need all three tests done at the same time, when on no type of thyroid hormone replacement, plus a lot of other tests, to make a diagnosis.

helvella
helvellaAdministrator
in reply to greygoose

This forum is not exclusively for Hashi's sufferers.

I certainly hope it isn't just for Hashimoto's! Otherwise I'd have to leave as well! :-)

Jenny583
Jenny583
in reply to helvella

Gosh, I would never have guessed you were other than hashi's -helvella.

helvella
helvellaAdministrator
in reply to Jenny583

I simply became hypothyroid. I do not know why.

Although it might be interesting to find out, it has never been my primary concern. That has always been reaching, and maintaining, the best treatment I can.

Once there, the cause seems so very much less significant. Especially as, when you read around, you can find numerous possibilities.

Jenny583
Jenny583
in reply to helvella

I admire your guts & perseverance. I would have gone down the same route as you & simply accepted that I was simply hypo- had I been told. But I only just found out that the hypo diagnosis was old & official, & I went broke in the process.

If I had known that I was hypo, I would have got a lawyer to uncover the truth while I still had the £, & pursued a way to get tested & treated B4 I got to the point that I was bedridden,

but here we are.

You are a life saver, without you specialists here on thyroid UK some of us would not be here, & the rest would be well on the way. I wont give up.

Thank you. xx

Jenny583
Jenny583
in reply to greygoose

I was alerted to the need for t3 & t4 by a friend that has hashis. I had just got the very 1st printout, only coz I was too ill to answer phone. The european GP was quite happy to sent printout & do ft's. She is probably only Dr that does. Unfortunately she always prefaced her letter with everything is fine!

Trouble was it wasn't fine& I had to struggle with very expensive self bought pills only to go over range or under range with allsorts, she was nothing more than a very pricy blood drawer, but I never got the tests that I asked for, just mostly u's & e's.

My new GP tested me for ferritin! I had come to believe that Jersey labs don't test for it. Now at least I can safely start taking iron, who knows, then maybe my hair will grow back?

BTW the endo did not like being told that low tsh with low t3 &4 could be caused by central/secondary, & accused me of unqualified opinionatedness , or some such ###.

If I were able to do links I would post the medical bible on endocrinology here & now.

I am going to show new GP, but she has wisely promised to get a real Endo that she knows, instead of the idiot that I would probably kill if I saw him again....

greygoose
greygoose
in reply to Jenny583

If the TSH is in-range, they always think everything is fine because they don't know any better. They have no idea of the subtilties and twists and turns of these problems. Your endo sounds like a right self-opinionated twit himself! lol Doesn't like the idea that a patient could know more than him. But I'm willing to bet that most of us do!

I'm not sure which book you're referring to as the 'medical bible on endocrinology', but the odds are very few doctors have ever read it!

Jenny583
Jenny583
in reply to greygoose

The book I refer to is the N.I.C.E hand book as quoted by professor Toft? I think.

But yeah, they don't like it up em by us mere plebs.

Time they enacted an anti hypochondriac pogrom B4 the hormonal women get out the torches & pitchforks & revolt eh?

greygoose
greygoose
in reply to Jenny583

Well, actually, the NICE hand book isn't much help to patients. It still advocates TSH and levo as the gold standards of care, as far as I know - which we the patients know are often pretty useless!

But, as it's all about the doctors, not the patients, it's easier for them to believe we're all hypochondriacs, then they don't have to do any actual work! Bring on the torches and the pitchforks, I say!

Jenny583
Jenny583
in reply to Jenny583

I was thinking of highlighting the most anti hypo patient paper by the BTF, as follows-

"How can blood tests be used to manage thyroid disorders?

The aims of treatment are to make you feel better and to ensure that you come to no long-term harm from your thyroid hormone replacement. The blood test for TSH, which is the most sensitive marker of your thyroid status, is used as a biochemical marker to ensure that your thyroid hormone replacement is adequate.

It is recommended that patients on thyroid hormone replacement should keep their TSH within the reference range. Some people feel better with a TSH reading in the lower part of the reference range and a FT4 level towards the upper part of the reference range. Over-replacement (eg if the TSH becomes undetectable) "

And then working my way to more radical heretical stuff like -

FROM VERY WELL HEALTH----

In People Without Known Thyroid Disease

While often associated with hyperthyroidism, a low TSH could also be a sign of central hypothyroidism.

Hyperthyroidism: Hyperthyroidism can be transient and permanent and due to a number of causes ranging from autoimmune disease, to toxic nodules or goiters, to pregnancy-related thyroiditis.5

Central hypothyroidism: Less commonly, a lack of TSH produced by the pituitary gland (due to its dysfunction) can lead to low thyroid levels in the blood. While this is an exception to the general rule that hypothyroidism is associated with a high TSH, central hypothyroidism is uncommon and usually associated with a deficiency of other pituitary hormones (and subsequently, a number of other symptoms).

These are very conventional views, but most GP's don't look beyond the 1st few lines of script. My aim is to highlight what lies beyond the 1st few lines.

The lawyers have not yet had time to formulate a jersey "judge made law" that could be used to silence us radical hormonals, & until they do - I will challenge the accepted "wisdom".

fibrolinda
fibrolinda
in reply to Jenny583

Many ppl on here do not have hashis, there are several I know of that have secondary hypothyroidism so please do not bow out 😯 lots of questions are to paint the picture of all your problems so we can all understand properly. More info more help😊 Don't give up on this forum it is life saving, as is greygoose . I self medicate, Many do. I also do private blood tests, Many do. Hang on in there xxx

Jenny583
Jenny583
in reply to fibrolinda

Bless you fibrolinda. I am encouraged by your kind words. xxxxx

Jenny583
Jenny583
in reply to fibrolinda

One thing that got me worried today - as I was gathering evidence from the British thyroid mob? to show GP, was that TSH deficiency apparently is rarely the only hormone missing, also that thyroid treatment invariably causes TSH or endocrine failure further down the line.

Another thing is that I have had head injuries which no one knows about - which could cause pituitary dysfunction, + I have had tests for another hormone which is suspiciously low, & I didn't ask for it either.

Jenny583
Jenny583
in reply to greygoose

The 1st 2 printouts - I was not taking t3 or supplements, the 1st printout was only tsh, the 2nd printout was very low in rage all 3. But I was not fasting so had taken (among other things) biotin.

But heres the thing, whenever I stopped or cut down I felt really ill, & B4 I started trying t3 I was very ill with CFS, there was a big improvement after friend gave me some old liothyronines to try.

Also It sounds like I had high tsh & low t3 & t4 for years. I will have to get medical records soon - for other reasons, but I will have to save up for that 1st.

BTW I am forced to take a tiny dose as otherwise new GP won't play ball, she wanted me to reduce by another 20% but when I tried that I slept all day during a lovely sunshine!

Only if I am very under range with the t4 will she allow me to see different endo.

greygoose
greygoose
in reply to Jenny583

The 1st 2 printouts - I was not taking t3 or supplements, the 1st printout was only tsh, the 2nd printout was very low in rage all 3. But I was not fasting so had taken (among other things) biotin.

OK, so the first one, with just TSH, is of no use. The second one, no matter that it wasn't fasting, but how much biotin were you taking? Biotin can disrupt blood test results if biotin is used in the blood analysis. Is it possible for you to contact the lab that did those tests, and ask them if they use biotin? If they don't, then those results are fine.

Also It sounds like I had high tsh & low t3 & t4 for years. I will have to get medical records soon - for other reasons, but I will have to save up for that 1st.

Are you sure they charge for records?

BTW I am forced to take a tiny dose as otherwise new GP won't play ball, she wanted me to reduce by another 20% but when I tried that I slept all day during a lovely sunshine!

Yes, well, she has no real understanding of thyroid, does she.

Only if I am very under range with the t4 will she allow me to see different endo.

In that case, can you stop the metavive and just continue with the T3?

Jenny583
Jenny583
in reply to greygoose

I think the biotin that I was taking was 10,000 ug's? But the point is that I was thrown out with no blood test or prescription for any of the medicines that I needed. On my way out I was told that I had all the symptoms of CFS. I was overcharged £57.

Yes they charge for records, a friend tried to get hers, but could not afford to, they told her that for past 37 years they had been mistakenly prescribing levo, & more recently liothyronine, (until - she thinks the price got too high)... but that she never had hypo - they had made a mistake, so now she is crippled, & is only prescribed amiltriptaline, then she kept having falls & broke several bones, she had to go to UK at her own expense, & even stay in a private nursing home, as she was abandoned with no physio, the air fares to UK hospital took the last of her savings, she now relies on neighbours to wash & dress her. The irony is that the UK hospital offered to restore her shoulder for free, but Jersey health refused to give permission for her to go, even though it would not have cost them anything!

But 1 cannot sue in Jersey, or demand records or even SAR's - as I recently found out myself. I am totally dependant on the new GP, who refuses to tell me what my t3 levels are. I recently brought food to this crippled friend, in her slum, she cannot afford broadband as all her partial pension goes on rent, & with the lockdown no one can put a sim card in her phone. She is too ill to do it herself, & I can't go near her because of strict rules over the virus pandemic.

I had already been to GP, (my usual GP) a month B4, & so I then had to crawl back to her again so that I could get the prescription, so £50 per month just to try & get to the bottom of why my ft3 & ft4 were on the floor in spite of biotin. Since I left off the biotin a few days B4 test, the T3 has plummeted in spite of increased meds so...

The "on the floor" phrase was from someone on this forum - it may have been you greygoose! but I now feel worse than when I had severe hypo at 25 yo caused by having taken high dose carbimazole & propranolol - (up to that point ) for almost 3 years, with no block & replace. I had to wait nearly 3 years B4 the hospital started monitering me, & nearly 4 years B4 they let me stop the carbimazole, I went down hill after that. And I never was told what disease I had.

So because I felt as though my hormones were very under range when they were only bottom of the range, I wondered if maybe the biotin was skewing them into appearing in range. But I was struggling to find the money for all the vitamins & anti oxidants, & the huge fees that the GP's were charging me - as I get less than a pensioner.

The only reason I am still on the GP's register is that I don't know of any way of self administering the HRT that GP's prescribe me. But if I did I would have £ left for some gluten free food & diabetic food too, as the t3 & HRT is relatively cheap.

The previous GP practice were charging me £5 to pick up a script for a form of HRT that the chemists told me were out of production for 2 years, so I had to go to the GP each month at an additional £50 a time to pick up a script for a form of HRT that was still being manufactured. But if I called them for a repeat script they issued a script that could not be cashed! so I was then forced to go & pay £50 in person for a valid script!

When I didn't have the £ for the GP, I had to go without any HRT. The GP's then told me that I felt ill because I was very often going without the HRT. But they still made me go round for "review" 4 times a year. So I was no longer allowed blood tests, I was not allowed to talk about my eyesight or any other concerns, I was not able to drive the car very much because of blurry vision, also I had peripheral vision problems, which made driving scary.

I was told by lawyers acting for the government that as the GP would not recommend "therapy" - in order to qualify for a victim compensation scheme, (in spite of the fact that I was branded by GP's as depressed my entire life) so (nothing to do with health) - yet- I would have to pay for private counselling & the government would reimburse me what it cost, & that they would release my medical records, which would have had some bearing on my redress compensation, so I had to find £ which amounted to half my income each week for 7 months, after which I ran out of £.

The lawyer then told me that as my GP would not send me for therapy - I would not have counselling costs paid. And the police disappeared the victim statements, and then told me that they had found them, but they re wrote them, so the statements that the lawyer received are fake. Result - no compensation or justice, & I am out of pocket for inappropriate "counselling", from a very venal counsellor. So now I am re traumatised, & have severe major depression, as well as cpsd.

When I went from GP to GP in search of "talking therapy" I had to pay GP £ only to be told that therapy does not exist here, that it is merely a government propaganda tool to fool the world into thinking that victims of crime with severe trauma are being helped. The GP that told me this also told me that if I ever got near a psychiatrist that I would be sectioned for the major depression, as I am allergic to anti-depressants which I took for over 25 years, but cannot now tolerate them, & that in such cases lithium is what they use.

He also told me that I would be force fed lithium, even though I do not have bipolar depression. He then sent me a letter which I got on xmas day 2018, (the only mail I got) - to say that they did not want me in their patient list.

Every practice I went to told me to clear off back to the GP that refused me ferritin tests, & ignored the hypocalcaemia, & very low temperature, baldness, dermatitis, osteoporosis, rickets, hyperparathyroidism, inflamed eyes, deteriorating vision, referral to endo.

The only GP from a second opinion practice that even bothered to give me his opinion, ( & - I was only allowed to darken his door because of the dermatitis & alopecia )& a mutual friend - as he takes a special interest in dermatology, & so only he could refer me to a dermatologist - told me that he could not refer me as A, the dermo at hospital only does mole checks (nice little earner for both GP's & dermo's) & B, that all my symptoms were clearly caused by endocrine dysfunction & iron deficiency.

He then checked my records & sternly told me to go back to GP & insist on a referral to Endo, which I did. The then GP felt obliged to reffer me. Some weeks later after a hospital blood test I was sent a appt letter & saw the Endo. After months of postponements & cancellations I did not see him until the following year. That Endo accused me of buying high dose t3 for years & denied that I had ever had thyroid disease. I showed him the t3 that I had just that week bought, & made it clear that I had not started to take them yet, That I was taking high dose supplements which he called Armour type NDT. I told him that I would start taking the T3 the next day, but in letters he wrote That I was at that point in time taking T3 & didn't mention the supplements.

So all the Dr's believe him, & that he is justified in not investigating the other low hormones or symptoms of low hormones. I only know that the endo pretended to do the coeliac, & pituitary hormones, as advised by 2 GP's & that on the record chart that I made him print out - only u's & e's were recorded, leading me to suppose that he threw out the pituitary tests, & is now convincing the medical profession that I have induced low tsh, & that the barely half way through range t3 of (6 pmol/L )when I was taking the most I ever took - (that is) - 130 mg of ndt supplements which I was taking at that time, on account of the severe brain fog, he wrote that it was borderline over range!

He then wrote this --- "There are no recent blood tests available, but I discussed with mrs ***** that I do not have any blood tests since 2014 that confirm that she ever

was hypothyroid. with these supplements, it is the thyroid which I can see in June was borderline overactive with a suppressed TSH" ---

Then he made out that we agreed that I would submit a sample that day, after previously telling me that I would not be submitting a sample at the clinic, & needless to say the blood sample that I had taken at phlebotomy disappeared, & he (having told me to take my usual dose on the morning of our appointment in order that I could attend said appt with him - then told me to submit my arm, well naturally I refused as - to submit a sample of blood when you have taken a morning dose, would skew the results in much the same way as my B12 was showing in range when I had taken a B 12 supplement on day of test.

He concluded the letter with the following ----

" Clearly it is not possible for me to supervise her care especially when she is deciding to use treatments on her own assessments and diagnosis."

"Follow up is in 3 months so that she could discuss it again and we'll be happy to help if she agrees to discuss her treatment options with us further." ----

I should point out that as my medical history was buried, & as the GP who left told me that I had been hypo since my records were destroyed in 1981, and as the hypo was said by this same pre 2014 GP to be the cause of my high cholesterol & escalating BP, - I was wondering if the records were destroyed again in 2014 - perhaps to hide up this fact.

That same pre 2014 GP that told me about the low thyroid was a born again Christian, so would not have lied to me.

The new GP confirmed that the pre 2014 had left surviving records that showed this, though would not go into details. Instead she made an appt with a psyche.

So which is it? Am I mad or am I hypo?

Whenever I have had an allergic reaction to toxic meds like propranolol or anti- depressants or anti BP meds or pantoprazole and have had to stop taking them - not that they ever improved things - I have been sent to psyche. Psyche then bounced me back to GP, with a flea in my ear, & the stern words like "go back to your Dr you are physically ill" And whenever I go to GP in search of counselling -( remember, there is no such thing as counselling in Jersey) as it's PR to hide the fact that banana republics are bad for the health of the poor), - I get the "go & pay privately for a psyche you are not physically ill Just insane & in need of a straight jacket & massive doses of lithium.

Whenever I go along with the Ok so I'm physically ill according DR's so & so & so & so - I get the - "go & get private counselling, you are not physically ill, you are just an insane hypochondriac, & your medical records only go back 10 or 6 or 37 years, & if you are now broke - because we took all your £ - so then you need to sell your house, in which case you will have to get off your fat arse & stop asking for referrals or blood tests.

All I want to do is save up the £ to write my will, (wills cost a lot in Jersey) - so that my evil wealthy next of kin does not get my hovel. I doubt if stopping T3 or supplements would enable me to get that far.

I have an appt with a psychiatrist this month, if I continue to take t3, I will remember the appt, if not I would probably forget appt & probably be asleep all day.

I am relieved to see that the psyche is a female, I hope I don't get a male minion of hers!

Sorry to ramble on so, but I am only on 64mg of NDT supplement & 6mg of T3 at present, so my cognition & sanity are questionable at present.

greygoose
greygoose
in reply to Jenny583

That is a terrible story of medical mis-management, and I really don't know what to say to help you. You obviously are hypo - and not mad! - is it not an option to stop seeing all these crazy doctors and just self-treat?

Jenny583
Jenny583
in reply to greygoose

I was merrily going down the route of going it alone, but then a Dr & a medical paper put a spanner in the works. Also the Endo I saw was banging on & on about the growth hormone tests - when I had not even mentioned GH.

That got me all suspicious & paranoid! especially as those tests had not been done.

So I looked up Growth hormone the next day, & the medical papers told of a cognitive impairment/low IQ, personality changes, weight gain, depression etc, which is everything that fits me now.

Now, I have known many Women with hypo T & they do not display those characteristics, & I have been told by many psychologists & psychiatrists that I am not mentally ill, nor have I ever displayed any personality disorders.

I wonder if my only crime is that I am a barren/orphan/widow, & so fair game - in a very corrupt place?

having said that - I probably will have to go it alone, I could buy the anti-histamines over the counter much cheaper than I could get them through a GP. I could maybe get the HRT over the internet, along with T3 - as I am currently doing.

But 1st I have to satisfy my conscience that I did everything I could to explore the possibility of HPA axis failure, through the "official route". If it wasn't for the senility & personality changes I would have assumed that the medical literature that explained the effect of anti thyroid meds on the pituitary gland & the effect on TSH.

It is possible that the endo that I saw was a psychopath that couldn't resist the temptation of winding me up - but any way I will hopefully see a different Endo -thanks to the new & young Gp's efforts to get me a different endo that she personally knows.

Playing it by ear. Jenny.

greygoose
greygoose
in reply to Jenny583

So I looked up Growth hormone the next day, & the medical papers told of a cognitive impairment/low IQ, personality changes, weight gain, depression etc, which is everything that fits me now.

Yes, but those are also hypo symptoms. Don't get hung up on the Growth Hormone. It's quite possible that yours is low, as I said before, lots of hypos have low HGH because of the low T3. You need good levels of T3 to make HGH, and good levels of HGH to be able to convert T4 to T3. So, it's a vicious circle, only broken by taking T3 - which you've been doing.

Even if you did turn out to have low HGH, what are the chances of you getting treatment for it? HGH is very, very expensive, and you have to inject yourself every day. And, HGH is difficult to handle, because it has to be kept refrigerated at all times. Unless you get the powder kind, and make up the solution to inject yourself, with sterilised water. But, the only source of powdered HGH is China, and would it really be advisable to get it from there? Even if they agreed to sell it to you! They're very fussy who they sell to.

Now, I have known many Women with hypo T & they do not display those characteristics, & I have been told by many psychologists & psychiatrists that I am not mentally ill, nor have I ever displayed any personality disorders.

There are over 300 hypo symptoms, and no two people have exactly the same set of symptoms. It depends on all sorts of things which symptoms you are likely to have. I very much doubt that you are mentally ill, you are just hypo. Your list of symptoms just happens to include symptoms of a brain suffering from low T3. The brain needs an enormous amount of T3.

I wonder if my only crime is that I am a barren/orphan/widow, & so fair game - in a very corrupt place?

That could very well be.

Playing it by ear.

That's pretty much all we can do. :)

Jenny583
Jenny583
in reply to greygoose

Bless you greygoose. You have restored my confidence. If only quacks were as kind & knowledgable as you.

It is encouraging to learn from you that I may not have pituitary failure, but that - as with the malnutrition & iron deficiency - I may just have transient secondary giblet sluggishness, through lack of T hormones.

If only you were an Endocrinologist, I would pawn my hovel & hire a nurse to take me to whatever country you live in to get bloods & scans & stuff... I would also ask you "how the hell do you put emoji's on these posts, (via a chromebook) - as my ability to speak or type words is kaput, & emoji's would be the way forward - now that I am dumb.

I will do as you suggest & not get hung up on GH - for now.

But the reason I got hung up on the GH in the 1st place is only because the snaky malignant narcissist Endo told me that I did not need GH. I did not know that I was to have the GH test, I only knew that I was to have the coeliac test, & I had eaten a high gluten diet for a year B4 hand in preparation, & several months B4 the test was due he sent a letter to say that my coeliac test was negative, but I had not had the test!

Then when the tests were due (including a complete iron panel) - he told me that my pituitary tests were fine, that I "DID NOT NEED GROWTH HORMONE", but he said this 3 times, which made me suspicious, & so (thinking that my phone record function was working) - I asked him to show me the screen - as he also kept telling me that my T3 was over range.

Well there was no Thyroid tests ordered, so how could he have a result for over range when no test was carried out. At that point in time I was only concerned with the fact that he was lying about the thyroid status, & implying that I had no TSH - that I had suppressed it with massive doses of as he called it "black market sports steroids".

So then he pointed to an old? test that was carried out in March 2019 by GP when I was taking the highest dose of 130 mg of NDT for a short while, as I had some dreadful legal battles going on, & had to gather my wits, which was totally irrelevant as I told him that I had stopped NDT & started the T3 the day B4 I saw him. But when I checked to see what this "over range" T3 was , it was just 6.1. So over range here is halfway through range, & under range Tsh is also over range t3, irrespective of whether T3 or T4 is 0% on border, or even under range, black is white...

The only reason that the hospital sent me for endo appt is because they didn't like my unstable BP or the under range tsh & T4 , or the high glucose & cholesterol. Gp's would not test these in spite of long history of these problems! And it is the hospital - not the GP's that sent the ambulatory BP monitor appt. So -this is the "self induced thyrotoxic" result from when I was trying high dose NDT - that he referred to.

- TSH <0.02 L mU/l ( 0.50 ) - ( 5.00 )

FT3 6.1 pmol/L (4.3 - 8.1 )

FT4 16.3 pmol/l ( 10.0 - 25.0 )

I could not see what else was on the screen because of my blurred vision, so I had him print off the screen. He then told me that if I insisted on taking the self bought T3 - that I only take 5mg, which I agreed. But I felt too ill to keep that up & so I had to add NDT

When I got back I looked at the printout that endo gave me, which included all the tests that GP had arranged from 2016 onwards - and looked at the tests that I had done by the phlebotomy lab and compared it to the blood order form that I had photo copied B4 I handed the order form to the lab, this was the result.

Tests ordered -iron studies, Coeliac screen, U & E, LFT, FSH, LH, IGF-l -then something he scribbled out, & finally prolactin.

Prior to the blood test -The Nurse at metabolic clinic had told me that I would be sent a letter advising me when I would be going to a hospital to have a blood test several times on the same day I think that was the IGF -l? , but I never got that, anyway when I got back & compared the printout that I made the endo give me, where he said that I had had all the tests that were on the order form - I noticed that the only tests done were the U & E & FSH, so no prolactin, no iron panel, no IGF-l, no coeliac screen, LH,

Now I'm no expert on these things but I cannot figure out how I could have follicle stimulating hormone at my age, as my ovaries packed up 10 years ago!

And remember - I have hypocalcaemia, I would have thought that with my osteoporosis, wedged spine, & rickets that someone would have wondered why & done the usual tests for that.

But when I went to my (then GP) to try & get some kind of HRT coz the endo wrote that I must go to GP for thyroid tests & that he had wrote to her the same letters that he wrote to me, & I then told that GP that the Endo was lying, & that I had documentary proof that he had lied about the tests ,she stonewalled me, after telling me that she had had no letters from him, but I would not leave until she took my blood.

She took my blood, but I was talking to a brick wall.

I was very upset, as I was then left with no GP.

When I got the results of that test, the counsellor that I had been tricked into seeing - at my own expense

also became hostile, she would not look at the test results, & realising that she would not be getting any more £ from me, she told me that I was a rebel, & that I should have made peace with GP, which I had tried to do, she also accused me of persecuting the DR's, yet I was t4 below range, & the Dr's were the ones that were persecuting me.

Also my breasts were very painful, & swollen, as were my eyes.

So all the £ I wasted on Dr's & so - called counsellor, & all the hoops I had to jump through, while everyone believes that I am a radical extremist persecuting lying hypochondriac leave me wondering what this psyche is going to make of me.

The only consolation is that I wont be paying for any more overpriced "grand inquisitors",i.e I would receive a free "trial & condemnation", assuming that is that the 'health service' is still running, I won't hold my breath.

So you see that either the endo & gp's are hiding something up, or the endo is winding me up for the fun of it. So when I have saved up, I will try to access my records, but this time I may need to get an advocate to help me.

Meanwhile I may need to try levothyroxine if the GP offers it, but if she does & it cripples me - bearing in mind that I do not have access to t3 results, & the Dr's here only go by TSH, then I will continue to seek advice from you amazing angels.

Appointment & test is 10.30 am tomorrow. I must take both doses of NDT in middle of night along with 6 mg of T3, Have I got that right?

greygoose
greygoose
in reply to Jenny583

If only you were an Endocrinologist,

No, I don't think that would be a good idea, because I would be NHS trained and brain-washed, and would probably believe all the same old rubbish all the other endos believe!

Prior to the blood test -The Nurse at metabolic clinic had told me that I would be sent a letter advising me when I would be going to a hospital to have a blood test several times on the same day I think that was the IGF

No, IGF1 is just a simple one-off blood test. Possibly having a test several times during the day would be to do with adrenals/cortisol. But I don't know for sure.

everyone believes that I am a radical extremist persecuting lying hypochondriac

You sound like my kind of person! lol

Meanwhile I may need to try levothyroxine if the GP offers it, but if she does & it cripples me - bearing in mind that I do not have access to t3 results, & the Dr's here only go by TSH, then I will continue to seek advice from you amazing angels.

Why would you think that levo would cripple you? A lot of people do very well on levo. You shouldn't go into it believing that it won't be right for you. At least give it a fair trial with no preconceived ideas.

I know levo gets a very bad press on here, but it really annoys me when people go on about it. It didn't suit me, but then again, neither did NDT, so it's not fair to others to say bad things about it. But, of course, dosing by the TSH is not helpful.

I would also ask you "how the hell do you put emoji's on these posts, (via a chromebook) - as my ability to speak or type words is kaput, & emoji's would be the way forward - now that I am dumb.

I would say you're far from dumb! You express yourself very well.

Most of the people that use these wonderful emojis on here are doing it on their phones. I do not possess a phone, and can only do one or two on my PC. Like a regular smiley, which is : plus ) No gaps in between.

Angry is : plus (

Sad is : plus ' plus (

Cheesy grin is : plus D

Wink is ; plus (

And that's about all I can do. I used to be able to do an elephant and a penguin, but I've forgotten how. lol

helvella
helvellaAdministrator
in reply to Jenny583

Firstly, I am definitely not a lawyer, nor any form of medic. But it appears that Medicines (Jersey) Law 1995 has a very similar clause to the UK which allows personal importation for self and household.

14 Exemptions for imports

(1) The restriction imposed by Article 8(3) does not apply to the importation of a medicinal product by any person for administration to himself, herself or to any person or persons who are members of his or her household, and does not apply to the importation of a medicinal product where it is specially imported by or to the order of a doctor or dentist for administration to a particular patient of his or hers.

jerseylaw.je/laws/revised/P...

If that is correct, calling it Black Market is using language to load a message which might not be supported by the law. A common trick. In the UK we have seen Black, Red and other colour lists of medicines, the message being we are not allowed to have them. The legal status of many of these lists is very questionable. The medicines are very often allowed even if hedged around by restrictions and unwillingness to fund.

We often see the term Grey Market for goods, including medicines, imported through non-mainstream channels.

Jenny583
Jenny583
in reply to helvella

Thank you helvella, I don't usually call my medicine "black market", I merely illustrate the attitude of 'dr's' here. The Endo wrote in a letter - that I had been buying "sports steroids" for years off the internet, & told me that I was taking steroids to "feel good".

I was only taking a supplement (metavive)....

helvella
helvellaAdministrator
in reply to Jenny583

I appreciate that you don't - but I think that any doctor calling it that is out of order.

Jenny583
Jenny583
in reply to helvella

True.

Jenny583
Jenny583
in reply to greygoose

I know that it takes around 2 weeks for tsh to return to normal after it is supplanted by external source of hormone - but I was expecting the t4 to at least be in range after I took 3 lots of t3 one of which was during the night.

So I wondered if that could mean that the tsh signal was defunct & so thyroid was now totally dependant on external source of hormone. I would feel much better if my T3 range were high in range.

As exercise uses up energy & that energy comes from whatever t3 supply is on hand, maybe I was running on empty & adrenaline, as I was crashing more & more. I have in mere months - put on over 2 stone, I have never been so heavy,

Which is why I would like a brain scan.

greygoose
greygoose
in reply to Jenny583

I know that it takes around 2 weeks for tsh to return to normal after it is supplanted by external source of hormone - but I was expecting the t4 to at least be in range after I took 3 lots of t3 one of which was during the night.

2 weeks is a bit optimistic. TSH is unpredictable, and might never rise again. Which is just one of the reasons it shouldn't be so heavily relied on by medics. But, you can't tell them anything!

I'm getting a bit confused in this thread, to tell the truth, because the replies are not in strict chronological order. But, I thought the FT4 was in-range on that test? Sorry if I'm wrong about that. Taking T3 lowers FT4, it doesn't raise it, it can't do that. It's taking T4/levo that raises FT4.

Jenny583
Jenny583
in reply to greygoose

I'm sorry to cause confusion, but the level of confusion is possibly reflective of my poor memory, which is worse now that I am on bare minimum of supplementation. The hormone that I expected to be in range was T4, that was under range, whereas B4 it was in range on a lower dose of supplement. But the tsh is always under range whatever dose I take. The last test that I had sight of ___the T4 was UNDER range.

" I know that it takes around 2 weeks for tsh to return to normal after it is supplanted by external source of hormone - but I was expecting the t4 to at least be in range after I took 3 lots of t3 one of which was during the night."

R.e The above quoted statement - I was surprised that the T4 was so low as I had as always taken thyroid 8 - 10 hrs B4 test, But that test did not reflect this or the fact that I had had a large dose the day B4. Though only the last dose was T3, the morning & afternoon doses were of NDT.

So I am wondering if I have permanently put the TSH facility to sleep by self medicating.

Yes the t4 would be low, as I tried to explain to GP's, but they did not understand what I was trying to get at.

I have tried more than once to go a full 2 weeks without any supplementation, but I always ended up almost comatose.

I would not have been able to go & get a blood test even If I woke up.

I don't know if the increased confusion now is a reflection of a hypo brain fog, as I am no longer able to get blood test results.

It seems like I am in need of more & more external thyroid supplementation.

I don't even know if my brain could even produce TSH now.

The highest it the TSH gets in recent years is 0.10 mU/l (0.50 - 5.00 )

And that is on a dose of T3 that is only enough to get me out of bed.

When I was on a dose that got me as far as a lawyers office I could not get the TSH past 0.02 & the T3 was only halfway.

I should point out that just prior to being given a pot of very old T3's to try by a concerned friend, I was so senile that I could not use an elevator, & was not able to go out of the house for weeks at a time. That friend that I had not seen for years was in better shape than me & was still allowed to take Levo, she diagnosed me & treated me, until the 6 year old T3's that she gave me ran out, I was able to go out every week. Without some form of T3 would not be able to get out of bed or cook, or drive the car to shops or Dr.

greygoose
greygoose
in reply to Jenny583

The confusion is not your fault, it is the way the forum is laid out, with questions and responses not necessarily being in chronological order.

R.e The above quoted statement - I was surprised that the T4 was so low as I had as always taken thyroid 8 - 10 hrs B4 test, But that test did not reflect this or the fact that I had had a large dose the day B4. Though only the last dose was T3, the morning & afternoon doses were of NDT.

The last dose of T3 AND NDT should be taken 8 to 12 hours before the blood draw. So, your last dose of NDT was longer than 12 hours, which would explain, in part, the low FT4. But, it is the FT3 the most important number, so don't worry about the FT4 at this point.

So I am wondering if I have permanently put the TSH facility to sleep by self medicating.

It's not self-medicating that deregulates the pituitary/thyroid axis (puts the TSH facility to sleep), it's keeping the TSH suppressed long-term. However, that is only a problem for doctors, it's not a problem for the patient!

I have tried more than once to go a full 2 weeks without any supplementation, but I always ended up almost comatose.

Well, you would do. Because you need thyroid hormone to live.

I don't even know if my brain could even produce TSH now.

It's not your brain that produces TSH, it's the pituitary gland that is situated within your brain. But, it's not so much a question of your pituitary producing TSH, but is your thyroid capable of producing thyroid hormone? If it isn't, then you need thyroid hormone replacement (T4/T3/NDT). And, if your doctors will not give it to you, then you need to self-treat and spent the money on NDT or whatever, instead of paying ignorant doctors.

Jenny583
Jenny583
in reply to greygoose

Well said, I meant pituitary not brain, I'm lazy, have lost the ability to spell words like pituitary, but I can still spell brain, & I can't see too well...

I suspect that my thyroid has shriveled away, my neck is very scraggy now. B4 it was quite prominent. I just don't understand why the TSH was starting to get close to the low border BEFORE I started trying T3 for the 1st time. 2.5 years ago.

So do I take all the thyroid doses in 1 go at midnight b4 draw?

And the Doctors do seem scarily obsessed with with a low TSH even when t4 & t3 are right on the borders of under range!

I'm worried that the new GP will put me on low dose levo, & tell me to stop the t3/ndt on Wednesday, and that I will feel more ill, & be tempted to reach for the kriptonite (T3) - like some craven junkie.

But I am even more concerned that I will become even more senile than I am now, and be always wondering if the cause is lack of growth hormone. Because in a medical paper that I read today, they state that low tsh on its own is extremely rare, & that invariably other hormones will disappear. I hope this endo is prepared to let me have scans of giblets despite the pandemic, the hospital is almost empty now, & some of the blood tests were invalid as they were 12 years old.

If I could be certain that it is only thyroid and not pituitary failure - then I would be happy to go it alone. Thank you for your amazing wisdom, patience & common sense.

You are a star! I will sleep better now.

greygoose
greygoose
in reply to Jenny583

I suspect that my thyroid has shriveled away

If you have Hashi's, that would be perfectly normal.

I just don't understand why the TSH was starting to get close to the low border BEFORE I started trying T3 for the 1st time. 2.5 years ago.

And having Hashi's could explain that, too.

And the Doctors do seem scarily obsessed with with a low TSH even when t4 & t3 are right on the borders of under range!

That's because they're ignorant and don't really know what T4 and T3 are or what the do - and I'm not joking there! I know that for a fact!

I'm worried that the new GP will put me on low dose levo, & tell me to stop the t3/ndt on Wednesday

Well, you wouldn't be the first person to totally ignore what the doctor told them to do! But, you could give it a trial for a while and see how it goes. If it doesn't work out, then you can add in your own T3/NDT.

But I am even more concerned that I will become even more senile than I am now, and be always wondering if the cause is lack of growth hormone. Because in a medical paper that I read today, they state that low tsh on its own is extremely rare, & that invariably other hormones will disappear.

Doctors are always telling us that thing are rare - and that's usually because they never test for them! If you don't test for something, it doesn't exist. The say that Central Hypo is rare, but only because most of them have never even heard of it! After reading on here for x number of years, I could tell them it's not as rare as all that!

It depends why your TSH is low. If it's because your axis has been down-regulated, then the other pituitary hormones will be ok.

Or, it could be because the problem lies with the hypothalamus, rather than the pituitary. The hypothalamus has to stimulate the pituitary to secret TSH. If the hypothalamus is not working properly, it won't secret the TRH to stimulate the pituitary to secret the TSH. Therefore the TSH will be low, but other pituitary hormones will be ok.

But, it could just be Hashi's.

Sleep tight. :)

Jenny583
Jenny583
in reply to greygoose

Thanks greygoose. I bow to your superior judgement.

I did try to explain all them big technical terms that I learned from this forum - to Dr's - but like you say, they no understand & get all uppity, & my mind goes blank under the withering stares of their baleful eyes...😱

I found an imoji thingy, so now I can use sign language as my ability to communicate disappears - & put you all through your paces - or hell - wotever.

Sleep tight yerself. 😍

Jenny583
Jenny583
in reply to greygoose

I have just realised something here, you say -"Taking T3 lowers FT4, it doesn't raise it, it can't do that. It's taking T4/levo that raises FT4."

So if the new GP has me on Levo, & bearing in mind that she only tests TSH & T4, won't that mean that my TSH will still be low & that my T4 will be perfect - in her eyes, but I won't know what my T3 is?

Could I be out of the frying pan & into the fire?

Maybe I should not change anything until I see this different Endo that she is attempting to get for me.

Incidentally, The 2nd opinion GP that let slip that I had endocrine & iron probs (according to my ever so secret med records) - some months later - I bumped into him at a meeting last year - said that he hoped that I got the Endo named C***** which is the name mentioned by this new GP.

greygoose
greygoose
in reply to Jenny583

So if the new GP has me on Levo, & bearing in mind that she only tests TSH & T4, won't that mean that my TSH will still be low & that my T4 will be perfect - in her eyes, but I won't know what my T3 is?

That is perfectly true. You can't possibly know your exact T3 level without testing the FT3. But, you can go by symptoms, and if your FT4 is good and you still feel bad, then the odds are that your FT3 is still too low. It's low T3 that causes symptoms, not T4 or TSH.

Could I be out of the frying pan & into the fire?

Not necessarily, no. If T4 suits you, and you convert well, then you'll be better off.

Maybe I should not change anything until I see this different Endo that she is attempting to get for me.

I think it would be a good idea for you to try the levo, at least. You can't know if it's going to suit you without trying, and it would be the easiest option. Also, if you can persuade the new endo to test your FT4 and FT3 at the same time, then you will be able to see how well you convert. And, if it's obvious that you don't convert well, that is a new weapon in your armoury!

greygoose
greygoose
in reply to greygoose

Why can't you continue to see the 2nd opinion GP? He sounds alright.

Jenny583
Jenny583
in reply to greygoose

R.e the 2nd opinion GP - He had that haunted "mafia are watching me look" I have come to know that look all too well.

If I was of the imaginative & paranoid variety of hypochondriac I might be tempted to believe that as a 'business man' in a 'business practice', & bearing in mind that he is a junior GP - he needs to be wary of rocking the boat, here in sunny Jersey.

I am grateful to him, & would not wish him to be ousted by the mafia. Also when I asked if he would take me on - he said that if I could not get a referral that he might, but I got the referral to the euthanasist .

Then a friend (who set the ball rolling with her info on FT3 & FT4 knowledge & therefore saved my miserable bacon was upset that I had not tried to sign up with her daughters best friend - the young GP, so I did, & here we are.

greygoose
greygoose
in reply to Jenny583

OK, I see. The Medical Mafia! It's terrifying.

Mamapea1
Mamapea1
in reply to greygoose

Terrifying and just as dangerous as the originals...but probably kill more people and get clean away with it!😡 x

So the question remains - did I ever have a hashimoto's or a graves disease test?

The coeliac test is irrelevant as I was on a strict gluten free diet at the time, & the script that came with the test informed me that the test was invalid if the patient did not eat truck loads of gluten rich food for 6 weeks B4 hand.

Then a friend told me that she knows of 3 people who were diagnosed with coeliac via biopsy that were then told that they were no longer celiac , through this fake test. Result is no gluten free vouchers anymore, (& more sinister IMO) we were told that we were no longer celiac. So is there no promised hashi's test on what I posted?

I never believed that I was hashi's, but I was told that hashi's is the onl fruit, but also - I was told - at great expense by a private dermatologist that I may be growth hormone deficient, but they are not sharing their views with GP's so I is now broke & sick.

greygoose
greygoose
in reply to Jenny583

The Coeliac test is very unreliable anyway, even if you are eating a load of gluten. So, if being gluten-free helps you, just carry on.

Being told by a dermatologist that you 'may be growth hormone deficient' is not very helpful, either, unless he actually tests for it! Even so, by the sound of your doctors, I doubt they'd even know what to do about it. But, if it's any consolation, hypos are very often low in HGH because of the low T3. Raising T3 should improve your growth hormone - unless you do have a pituitary problem. Testing HGH is one of the tests they do to diagnose pituitary problems.

There is a test for Hashi's, in those results, as I said, but it's negative. Which doesn't prove anything, so good idea to get it done again.

Jenny583
Jenny583
in reply to greygoose

OK, I won't stress about the re -test, I don't believe that it will throw any new light on the symptoms or results. The only thing that concerns me is that I don't get the T3 printout now - unlike with previous GP. & I only got the printout in 1st place because the pal that suspected (as had other pals) believed that I had hypo like her/them, & told me to ask for T3 & T4, & then only coz GP panicked when I told her I was previously thyrotoxic.

But anyway, whatever the result of current tests , or how lack of fasting over the years may have skewed results , the fact remains that I had symptoms classic with hypo, with or without the anti- bodies, & I need to put my affairs in order - pronto.

greygoose
greygoose
in reply to Jenny583

But, are you still taking the metavive and T3? Because if you are, and you don't tell your doctor, the results won't prove anything. They will just confuse the doctor.

Jenny583
Jenny583
in reply to greygoose

Yes I still take 6mg of t3 & also metavive, but I would not be able to drive to surgery if I didn't take them both , I always speak truth, & if I kept quiet about the supplements then she might conclude that I don't need medication & as the last t4 result was somewhere in range then I would not be able to see Endo, & might end up crippled with Pituitary failure, like a Lady called Sandra that I knew who ended up seeing a neurologist, but too late.

greygoose
greygoose
in reply to Jenny583

OK, well, it's good that you tell her to put the results into context. :)

Jenny583
Jenny583
in reply to greygoose

You have reminded me too - that the Endo that I was saddled with pretended to test pituitary, but the tests were not on the records, so he clearly ordered blood to be discarded, then through it away, & refused to answer questions.

It doesn't exactly inspire confidence in what are locum fly by nights from UK, or for that matter local GP's when they feel they have to humour the client & lie, when the client has probably had to save up all year for the various GP consults & then all the fake tests!

greygoose
greygoose
in reply to Jenny583

Most doctors lie, all over the world. They do it because they have no true answers to our questions, because they know next to nothing about thyroid. Which is why forums like this exist. They just do not learn about it in med school - they have one afternoon on the whole of the endocrine system, so you can imagine how little time is devoted to the thyroid. Very few doctors have heard of Central hypo, and very few doctors know anything about Hashi's, and none of them are interested enough to do all the research and reading that we do.

So, we have to take everything they say with a pinch of salt, and research for ourselves afterwards. We cannot take any of them at their word, because they just do not know.

Jenny583
Jenny583
in reply to greygoose

My thoughts exactly. I may plagiarise everything you say from now on greygoose.

greygoose
greygoose
in reply to Jenny583

Be my guest! :D

Jenny583
Jenny583
in reply to greygoose

The 2nd opinion GP that told me that I probably have endocrine failure, but did not dare to go against the medical profession & urged me to go to my GP & insist on a referral - well I saw him at a meeting a few months later - & he told every one around the table that - GP's are given 15 mins instruction on a narrow range of disorders, & that they don't need or possess brains to be a GP!

He looked me in the eye at that social meeting - as he went on about iron deficiency & hypothyroid conditions.

I am horrified at the thought that Dr's in Jersey are given the final life or death arbitrary judgement over a patient (or as we are in Jersey ) "client" without any say by the 1 that is sick...

greygoose
greygoose
in reply to Jenny583

He sounds like a horrible man! And Jersey sound like a horrible place to be sick in!

Jenny583
Jenny583
in reply to greygoose

They send serial killing nurses to Jersey, so nothing surprises me anymore.

I lost 2 lovely friends recently, 1 had neuro damage & brain damage from b12 deficiency, she went nearly blind, couldn't feel her feet, lived alone & spending her savings on private nurses to just bring her 2 large sleeping pills each morning until - in her words "the £ runs out", she had to guess what she was putting in the microwave & how long to cook it for.

Another had thyroid disease was diagnosed when she was young, but then Dr's went quiet & said no more. She was riddled with complications, & in a lot of pain.

She then developed diabetes, when they put her on diabetes meds she developed terrible abdominal pain. I have not seen her since.

The irony is that her 31 yo diabetic son killed himself when the nurses at the hospital threw him out, he was homeless & had no medicine but the nurses believed that he was drunk. His last words were "Mum, I can't take any more".

The only reason his Mum didn't kill herself was that she couldn't put her family through it.

The lady that had neuro damage - last year her middle aged daughter dropped dead from a heart attack in her garden. She was about to go to UK for a spinal op. No one noticed that she had advanced heart disease. All these women were widows.

greygoose
greygoose
in reply to Jenny583

That is terrible. Poor ladies. I'm so sorry for you all and what you have to put up with.

i would try to draw a line under everything that s happened b4 and just let the new doc do the test she wants

That is exactly what I am doing.

Have you noticed a difference since you started taking the tablets?

"anemia can result from inadequate protein, iodine, cobalt,copper, vitamin E,or almost any of the B vitamins, particularly folic acid, niacin or B6. Wheat germ is an excellent dietary

source of iron as is brewers yeast.. Iron salts can destroy vitamin E. Because salts can destroy Vit E the E is beast taken 8 hours later than iron. The possibility of absorbing iron from food sources depends on good stomach acid. A sore tongue is a symptom for many with iron deficiency. As regards the magnesium and leg issues raise the intake and they will

go completely. Magnesium is very safe unless you have poor kidney function...."

I only started the iron again a few days ago, as previous Gp only did occasional transferrin saturation test, but never ferritin. I started taking iron over a year ago, but after a few weeks I had headaches, & had no way of knowing if I was destroying my brain, as I was very confused, & everyone though I was insane!

Now that my new GP tests ferritin, I can confidently take it & so not worry if it starts to go over range. I keep the iron well away from other pills (other than vit C). I take vit E at night along with Vit D, magnesium malate, turmeric, fish oil, selenium, K2, & occasionally 5htp.

I did buy apple cider vinegar, but I always forget to take it!

Yes magnesium & B12 helps my legs enormously, when my legs & feet go, I am reminded to restock those, I may try & get brewers yeast at same time....

I realised that I ran out of vit B6 some time ago, so I will order some today. xxx

Mamapea1
Mamapea1
in reply to Jenny583

I'm not sure how I arrived at this post😳...but I'm appalled, although not really surprised at your diabolical treatment...I always thought it would be such a lovely place to live too! It's worse than here! I can sympathise as I was in a terrible condition like you a few years ago. I hope you can hang onto some positivity and that you find some answers soon.

Look into every possible detail and sort through each one. I was surprised to find that I needed extra thiamin [B1] and pantothenic acid [B5] despite religiously supplementing with a B complex etc. for over 2 years! I studied each remaining symptom, no matter how small in comparison to what I had! Although I was already feeling much recovered after starting on high dose T3 [magical✨for me] the extra supplements resolved some residual problems. I couldn't seem to hang onto any vits/minerals while on Levo.

I will no doubt discover more subtle aspects as I go along...it's a minefield but it's got to be walked through...preferably without a Dr in tow that insists on leading you through the dangerous spots! The journey of reading and learning has become much easier with my improved health, and I very much hope that you will find the same. Best of luck🍀and take good care x

Jenny583
Jenny583
in reply to Mamapea1

Thank you Mamapea1. I am greatly encouraged by your words. I read through 1 of your battles, & was horrified by your plight, but also greatly inspired.

I will follow/read through again - as I cannot retain information! but I am much better now that I have some "happy pills" - from new GP/practice.

Like you I found B complex inadequate,I also take individual B vits, but on alternate days, with a B complex each 2nd day.

I too find B5 & B1 appear to reap the most benefits! We don't have access to vitamin or mineral tests here, (I only get the occasional B12 test because I was so run down, though that fact was kept from me!) - so we have to go by how we feel, same with self sourced thyroid.

But it all takes half my piddly income.

You have come a long way, I'll see how you overcame, & try to do as you.

I am still in 2 minds as to whether I should try Levothyroxine -if it is offered, & still don't know if I would be a good 'converter' & without blood test results especially FT4 - I'd have no way of knowing.... I am adamant though that I wont keep the appt with Dr Death in May, & hope that new GP remembers to get me a real Endo!

I wish you all the best. You take care. Jenny xx

You may also like...