I’m desperate. 2 years hypo. T4 meds only helped for a short time at beginning of diagnosis. Tried armour, T3 adrenal support etc nothing worked right. Have heavy metals maybe nutrient issues. I’m in a Dublin hospital in pre-myxedema state now and cannot get my diagnosis recognised as labs show as normal. All my records basically dismissed have been referred to psych as outpatient. Getting weaker every day and so scared, I cannot speak or walk well and feel like I’m made of paper and brain and body are shutting down. I have written letters and word docs quoting journals and sites about the issues with TFTs, and even done my own calculations on bloods and compiled all previous tests. What more can I do to prove? How can I get help? My heavy metal tests have been dismissed because they are ‘alternative’, but I’ve just done the calculation for non caeruloplasmin bound copper and that is above range (without Wilson’s disease). I also think recent MRI gadolinium was possibly retained and sent me over the edge . Any advice please on how to proceed, I am so frightened, I’m 29 and feel I could lose my life. Will I have to be comatose before anyone steps in, and even then will they recognise the diagnosis? My endo is back on the 6th for a consult, she is very nice but doesn’t even think I’m hypo. I could worsen by then. What more could I do?
Need help, dire situation : I’m desperate.... - Thyroid UK
Need help, dire situation
I'm very sorry you are in hospital and hope you get discharged soon. Of course, you have to feel much better
Request them to draw your blood early a.m. and it is a fasting test (they probably are unaware that TSH is highest early a.m. and drops throughout the day) I assume it will be at anytime in hospital.
Advise them that your blood should be drawn early a.m. (fasting - you can drink water)
Ask them to test your Free T4 and Free T3 as both should be towards the top of the ranges. TSH (if we're to feel well) should be around 1). Advise them that TSH drops throughout the day.
I hope you can get some resolution quickly.
So sorry to hear this!
Given that you have a diagnosis of hypothyroidism they need to look closely at your thyroid function
Have they just been testing TSH ...maybe with FT4?
This is totally inadequate as research proves -
bmcendocrdisord.biomedcentr...
"Time for a reassessment of the treatment of hypothyroidism"
John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann
thyroidpatients.ca/2021/07/...
I doubt they have tested FT3 which is the most important test
Full thyroid test includesTSH, FT4, FT3, vit D, vit B12, folate, ferritin, antibodies TPO and TG
T3 is the active thyroid hormone and is required by every cell in the body in a constant and adequate supply
Low T3 = poor health!
It is possible that TSH and FT4 labs may look "normal" ....probably all that has been tested...BUT your thyroid function may still be impaired.
T3 must reach the nuclei of the cells, from the blood, to render it active.
If this is impaired ( my problem) cellular hypothyroidism results... rather than glandular hypothyroidism
Labs may show an adequate level of T3 but if it is not transferred to the cells via T3 receptors that T3 will just slosh around in the blood doing nothing until it is metabolised and excreted from the body
Result... deteriorating health!
rejuvagencenter.com/thyroid...
thyroidpatients.ca/2018/10/...
Suggest you ask this consultant to have a full thyroid test carried out....
FT3 may be low requiring the addition of replacement T3/liothyronine...or you may simply need to increase your levo dose! Without labs we don't know
OR they may need to consider a form of thyroid hormone resistance.
Resistance prevents the T3 entering the cells. To overcome this, a supraphysiological dose of T3 is needed to act as a " battering ram" against the cell walls to force some of the dose into the cells where it can become active and maintain health.
Myxedema describes severe hypothyroidism, so if pre-myxedema is their diagnosis then they need to be treating you with the appropriate thyroid hormone ASAP....
I'm not a medic just someone else who has had to research and discover, why, despite being medicated with levo for over 20 years I reached the stage where I could barely function.
I now need high dose T3 to function because I have Thyroid Hormone Resistance which caused Cellular Hypothyroidism.
I hope you feel up to tackling some more reading and to taking this approach when you see your consultant. They should know this ...but probably don't understand it because it doesn't fit neatly into what they have been taught
I was nearly 70 before I discovered this, for decades medics had no idea what was wrong with me or how to treat me....so in the end I had to self diagnose and self medicate.
I hope this makes some sense, I've tried to condense it...
Your consultant may very well dismiss this as being the ramblings of "some mad old woman off the internet" .
There again you say, "My endo is back on the 6th for a consult, she is very nice but doesn’t even think I’m hypo."
if she looks at the labs you posted 12 months ago with the abysmally low Frees she should be in no doubt that you are hypo!! " Nice" isn't going to cure you....that takes knowledge!!
But they should know this!! ...but it probably doesn't fit neatly into what they have been taught.
Refer them to ThyroidUK...it has been recommended by the NHS!
Apologies if I'm telling you what you have already discovered yourself.
Best of luck and please keep us posted
PS....may I refer you to the responses here
healthunlocked.com/thyroidu...
Hugely helpful reply and yes cellular is my problem! All labs tested including T3 and all normal. But I think there is a heavy metal issue and I wonder does that need dealt with before I could tolerate T3 eg intramuscularly. I just need to collab with the endo and perhaps other specialties to figure this out fast. Aha, thanks for referring me back to my old post, I don't know how I did not see all of the previous replies at the time. Note how manic my energy was even back then, I've been struggling so so long. Was under a different endo in London at the time.
Heavy metals aside, the labs you posted 12 months ago (just looked!)show that your Frees are abysmally low and that you need replacement hormonesMost people would feel very unwell with those labs
she is very nice but doesn’t even think I’m hypo
How can she possibly miss that!
If she looks at those labs you posted 12 months ago with the abysmally low Frees she should be in no doubt that you are hypo!!
Being "nice" isn't going to cure you....that takes knowledge!!
Possibly she is a diabetic rather than a thyroid specialist!!
Your labs are not " normal"
When medics say normal they mean within range...not helpful.
What you are aiming for is a point within that range where you feel well and it's unlikely to be at the bottom of the range!
You say you took 50mg T4....I hope you mean 50mcg!!
50mcg is just the starter dose ...
You will likely find that as you increase levo you actually feel worse to begin with before the hormone eventually settles in the body ( takes 6/8 weeks to settle)
There is no quick fix! It's a very long slow process.
Having read more of your posts I would now stick my neck out and say you are basically very undermedicated...
There isn't enough hormone in your blood to saturate the cells
Until that serum level is increased it's too soon to say the hormone isn't working or reaching the cells....there just isn't enough hormone in your blood to reach the nuclei of the cells and if very little is available to reach there it has to be replaced with added hormone otherwise ill health follows.
Sorry, this is rather clumsy, hope it doesn't confuse the issue.....in a rush!
Hi everyone, results below, any help would be greatly appreciated.
* NB: From the beginning of becoming unwell I have always had a low normal TSH. Pituitary scan fine. Previous endo thought I had a TSH deficiency, treated with T4 which made me ill. I think likely HP dysfunction of some kind.
They tested TFTs on different occasions, switched assays somewhere in between then switched back to Roche, but only seemed to check FT4 here no idea why. Only on one occasion was FT3 tested.
Used the Spina Thyr app (thyroidpatients.ca/2019/06/... to input the TSH, T4 and T3 from this occasion. My results showed poor conversion from this.
From what I can see none of these were taken fasting, apart from cortisol.
Blood cortisol = 346 nmol/L .
DHEA = 27nmol/L. (RR 1.4-16.7)
Blood glucose is normal but insulin is low at <1mlU/L. Does anyone know the significance could this have as I don't quite understand. Not diabetic.
TFTS, 22/03/2022, Roche assay:
TSH = 1.59 U/L
FT4: 11.6 pmol/L ( RR 12-22)
31/03/2022, Abbott assay:
FT4 = 15.7 pmol/L (RR 9- 19)
TFTS, 11/04/2022: Roche assay:
TSH: 1.03
FT4: 15.2 pmol/L
FT3: 3.23 pmol/L ( RR 2.43 - 6.01)
My heavy metal tests have been dismissed because they are ‘alternative’, but I’ve just done the calculation for non caeruloplasmin bound copper and that is above range (without Wilson’s disease).
Zinc and copper tend to be "opposites" of each other in terms of test results.
1) When zinc is high, copper is low.
2) When zinc is low, copper is high.
Have you ever had zinc and copper tested? In people with thyroid disease the usual finding, when they are both tested at the same time, is for zinc to be low and copper to be high. There are rare exceptions to this.
If zinc is low, supplementing it will reduce copper levels.
If copper is low, supplementing it will reduce zinc levels.
I have read just one post from a member who wrote into the forum that she had results that were the opposite of usual and her copper was low and zinc was high and she had been very ill before she discovered her problem.
Zinc deficiency : en.wikipedia.org/wiki/Zinc_...
Zinc toxicity : en.wikipedia.org/wiki/Zinc_...
Copper deficiency : en.wikipedia.org/wiki/Coppe...
Copper toxicity : en.wikipedia.org/wiki/Coppe...
If I had high copper and low zinc I would supplement zinc (but not in very high doses).
If I had low copper and high zinc I would supplement copper (but not in very high doses).
Selenium is another mineral that people often get a benefit from supplementing because it is required in the conversion of T4 to T3.
Selenium deficiency : en.wikipedia.org/wiki/Selen...
Selenium toxicity : en.wikipedia.org/wiki/Selen...
Iodine is a component required in making thyroid hormones and many people think that supplementing it is going to make them feel wonderful. However, both low and high levels can make health substantially worse. Deficiency needs to be fixed, but toxicity must be avoided. Guessing is not a good idea. There are several ways of testing iodine, but quite a few of them are totally unreliable.
Iodine patch testing is useless. Results will differ depending on how warm the patient is and how warm the atmosphere is.
Iodine loading testing is useless. There is an explanation for this in these links :
blog.zrtlab.com/flaws-in-th...
townsendletter.com/Jan2013/...
The best iodine test is the non-loading urine test. Genova Diagnostics sells the test recommended by Thyroid UK. However Genova deals with the public at arm's length, so reading about how they work is essential to understanding how to pay, how to test, and how to get results :
thyroiduk.org/help-and-supp...
thyroiduk.org/wp-content/up...
Autoimmune disease is the commonest cause of hypothyroidism in Europe and North America, but in Asia iodine deficiency is the main cause.
There are multiple forms of iodine available for supplementation some with a prescription, some without, but I have no idea which one is the the best one in cases of deficiency. Many iodine supplements in pill form are kelp supplements. I have no idea if they do anything helpful.
Iodine deficiency : en.wikipedia.org/wiki/Iodin...
Iodine toxicity : en.wikipedia.org/wiki/Iodin...
Medical iodine : en.wikipedia.org/wiki/Iodin...
I have read some reports (but don't have a link) that low selenium levels will make iodine difficult or impossible to tolerate. So if both are low, improve the selenium first.
Vitamin A is another nutrient that is very important in thyroid function. People with thyroid disease may have low vitamin A. Many supplements that claim to contain vitamin A actually contain beta-carotene, which is a pro-hormone i.e. it is an ingredient required to make vitamin A but it isn't vitamin A itself. Taking "real" vitamin A will help to replenish low levels, but too much is poisonous, so care should be taken.
thyroiduk.org/role-of-vitam...
thyroidadvisor.com/benefits...
There are probably other minerals that ought to be tested, but few people ever do all the tests I've mentioned above because they are expensive. For example, I have never tested selenium and iodine or vitamin A, mainly because my pockets are not bottomless.
If you want to do some general research you might find some of the articles on these sites worth reading :
thyroidpharmacist.com/artic...
Posting results that you already have, along with reference ranges, would be helpful for us to help you.
Hello, thank you for the very helpful reply. My zinc and copper have been tested and they're ok but only serum, and reports say plasma must be checked for accurate zinc reading. The NCBC calculation does point towards an unbound/copper toxicity issue which is either zinc deficiency or caused by adrenal issues, since adrenal issues lower the copper binding protein. Had a saliva test ages last summer and my diurnal pattern was deranged.
Posting my results as reply to my own post above.
Hi Thyroidfun , Before treatment with Levo , you had normal TSH 1.31 , but fT3 was right at bottom of range and fT4 was only about 20%.
So ? endo /who ... decided to give you a trial of Levo even though TSH was in range.
They gave you 25mcg Levo which did improve FT4 to about 40 % ,but fT3 reduced and went below range ..
What happened next with the levo ? did they try an increase to 50mcg ?
You say no one at the hospital accepts your diagnosis ... whoever prescribed you the Levo back then is the person the hospital need to talk to if they have questions about your diagnosis .
What does the person who prescribed Levo originally have to say about this now ?.. have they changed their mind after your trial of Levo ?
Did the hospital say you have 'pre -myxedema' ? ~if they used this term that shows they do consider you are hypothyroid .. (or is it just how you are describing your current condition in this post)
Hi tattybogle that's a self description by me from how much i'm deteriorating and the severe advancement of my state . Yes, thank you, I'm going to try put them in contact even though they're in London. 50mg levo made me even sicker, I don't convert as I now know.
so are you currently taking no thyroid hormone of any kind at all ? you said your labs at hospital now are ' normal ' so the hospital won't accept that you have hypothyroidism .... on these hospital tests is your fT3 still at the very bottom of the range like it was before you were ever tried on any levo ?
how long have you been off any kind of thyroid hormone ? ...... if it's not very long then your labs may look better than they 'really' are .. in order to diagnose hypothyroidism you would need to be off any kind of thyroid hormone for a few months.. otherwise your result will look 'normal ' / better than they really are
You don't say why why are you in hospital currently, but do they know what thyroid hormones you have been taking and when you last took any ? .... make sure they do know if you have been taking any in the last few months because this will affect how they view your current blood test results .
looking at your reply to DippyDame it seems you are hoping someone will give you T3 intramuscularly .
T3 is not given intramuscularly .. in an emergency it can be given intravenously , but obviously this is not a realistic solution for regular treatment of hypothyroidism .
Hey, no I haven't been on anything and they know that, literally nothing worked, it's a long long story.
I've been to a lot of people and tried a lot, and have other complications. FT3 is now mid range but it's not getting into cells and I don't convert well (used Spina Thyr app for this calculation which is a brilliant tool). I meant intraveneously, genuinely feel I could be heading towards an emergency situation in due course. I came in originally for inspections 3 weeks ago, they made it sound like they could figure it out, but I’m barely able to walk now im so weak and everything’s slowed down. Whatever the resolve is here or if there are other factors that first need to be treated, I don’t know. I know it's not a solution for regular treatment, but there has been barriers to me taking oral medication because of another condition/problem I have. hard to express the scary hole I am in.
i'm not sure i understand your logic here.... why do you think synthetic T3 added intravenously would be any better at getting into your cells than your own T3 that is already in your blood is ?
I think you need to be realistic here .... they are not going to give you intravenous T3 when you have a mid range fT3 level and 'in range' fT4 level produced from your own thyroid .. especially since they don't see any reason for you to be taking thyroid hormones at all .
Sorry, late response as only just found this rather interesting thread, and I do get your point, but it does have so many similarities to B12 deficiency treatment (or the lack of) that you can't help but wonder what other stages could be failing to work properly that are being missed with thyroid hormone transport/metabolism, just like with B12 transport/metabolism. B12 in serum also can look fine, even high, and a genetic transcobalamin issue is far from being the only problem possibly encountered in a very long and convoluted process. Even with PA, some can use high dose oral/sublingual and some get no benefit at all. More genetic/epigenetic 'buffers' keep being found, so why not also with thyroid hormone. Many with seemingly normal B12 are hugely symptomatic and benefit from injections (some with high homocysteine and MMA, but not always). At least sometimes a therapeutic trial is given. I wonder if anyone ever gets a therapeutic trial of IV T3. (The two may be linked anyway - low B12 can affect pituitary function and interpretation of level of thyroid hormone, preventing appropriate TSH release.) Cheers
Have you tried Levothyroxine oral solution? I suddenly became very ill three years ago, long story but I have discovered that I cannot tolerate Levothyroxine pills or T3. However I started on Levothyroxine oral solution a few months ago and was able to tolerate it if I take an antihistamine every day. Also The brand I take has very few fillers. I am allergic to corn/maize and many other fillers which are in many drugs.
Hey, yeah I tried that too but I'm more intolerant to the solution than Tirosint (just gelatin). But T4 alone makes me sick.
posting results as reply to my own post.
Hi everyone, results below, any help would be greatly appreciated.
* NB: From the beginning of becoming unwell I have always had a low normal TSH. Pituitary scan fine. Previous endo thought I had a TSH deficiency, treated with T4 which made me ill. I think likely HP dysfunction of some kind.
They tested TFTs on different occasions, switched assays somewhere in between then switched back to Roche, but only seemed to check FT4 here no idea why. Only on one occasion was FT3 tested.
Used the Spina Thyr app (thyroidpatients.ca/2019/06/... to input the TSH, T4 and T3 from this occasion. My results showed poor conversion from this.
From what I can see none of these were taken fasting, apart from cortisol.
Blood cortisol = 346 nmol/L .
DHEA = 27nmol/L. (RR 1.4-16.7)
Blood glucose is normal but insulin is low at <1mlU/L. Does anyone know the significance could this have as I don't quite understand. Not diabetic.
TFTS, 22/03/2022, Roche assay:
TSH = 1.59 U/L
FT4: 11.6 pmol/L ( RR 12-22)
31/03/2022, Abbott assay:
FT4 = 15.7 pmol/L (RR 9- 19)
TFTS, 11/04/2022: Roche assay:
TSH: 1.03
FT4: 15.2 pmol/L
FT3: 3.23 pmol/L ( RR 2.43 - 6.01)
"They tested TFTs on different occasions, switched assays somewhere in between then switched back to Roche, but only seemed to check FT4 here no idea why. Only on one occasion was FT3 tested."
i'm only guessing cos i don't know where or why these tests were done , but a possible explanation is :
~They do the first test and find fT4 is unexpectedly below range , despite TSH appearing normal ..
~ They decide to check if the unexpectedly low fT4 test is suffering from technical problems by using a different process to test the fT4 .... usually done by sending a sample to another lab who have different machine that uses a different process.
( for one example .... a sort of mouse antibody, (yes really 
H.A.M.A human-anti-mouse-antibody ) that some of us have , can interfere with test results if tests are done by a process that involves the same antibody in it's method .. it's called 'interference' )
~ They find that the fT4 test done by different lab method (Abbott machine )doesn't agree with the Roche one,... so they know to treat your fT4 result's as 'suspect' in future.
~ So they then decide to have ask for an fT3 next time they test. since they don't quite trust your fT4 results anymore ?
...... that's a total guess.at what could be going on.. the real explanation could be a lot les complicated.
Was the 'FT4 only' (Abbott) test done by the same GP /Hosp as the Roche ones ?
Has anybody said anything to you about 'getting tests done at another lab to check for interference' ?
"Previous endo thought I had a TSH deficiency, treated with T4 which made me ill. I think likely HP dysfunction of some kind."
HP ? hypothalamus dysfunction ..as in 'not enough TRH' ? (Thyrotropin Releasing Hormone) .
I think Hypothalmus dysfunction would result in 'consistently Low fT4 / fT3 levels and Low/ Low-Normal TSH'... i don't think it would explain your fT4 /fT3 results being so up and down.
and it wouldn't cause a problem of Thyroid Hormone Resistance .
(thinking out loud here... but if Thyroid Hormone Resistance was an issue for you ,would it not mean that the cells of the hypothalamus and the pituitary were also resistant to thyroid hormone action ,,, and therefore would than not lead to high TSH ? )
Hi Thyroidfun,
Apologies if you've already mentioned this in your thread but have you had a synacthen test done to check your adrenal glands?
Hey, the plan was to do that on last admission but it got deferred because my blood cortisol was normal. Is it possible to have normal blood but a different response to ACTH testing do you know?
It's for sure not primary adrenal insufficiency anyway.
Sorry Thyroidfun I don't know.
Someone on the forum will likely know the answer.
The reason I mention it is I'm sure I've read somewhere (sorry for being vague/not feeling great today) that sometimes levo isn't tolerated well if there's a problem at adrenal level and so cortisol issues have to be resolved first
I'm hoping that someone will be able to expand on this or correct me if I'm wrong?
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