This is my first post and wanted to say hello and some advise please.
My results from let’s get checked:
T4 72 (normal)
TSH 10.3 (high)
Free t4: 10.4 (low)
Free t3: 4.5 (normal)
TPEX antibodies: 258 (high)
TGAB antibodies: 327 (high)
I didn’t get a phone call like I expected but have read and read. I’d just like some reassurance that my understanding is correct and advice on next steps.
From these results it suggests Hashimotos? That the tsh is elevated to compensate for the effect of the antibodies, the elevated tsh is keeping t4 pretty much normal, with ft4 dipping just under normal range. This means the levels are subclinical and wouldn’t be treated by gp? Have I got that all correct?
GP when I first asked for a test was very dismissive which is why I had private tests - to be fair NHS is fairly overwhelmed at the moment and it was a patients hunch. What do I do now? Just wait and see if antibodies damage the thyroid to the point where medication is needed (or get better?) and then go back in a year?
Is there really nothing I can do?
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Dandelade
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However GP will very likely want to repeat blood tests on NHS first
Always test as early as possible in morning before eating or drinking anything other than water (and, once on levothyroxine, last dose levothyroxine 24 hours before test)
Standard starter dose of levothyroxine is 50mcg
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Unless you are or suspect you’re lactose intolerant, avoid Teva brand levothyroxine as it upsets many people
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
Request GP also test vitamin D, folate, ferritin and B12 plus coeliac blood test
When hypothyroid we frequently have LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
Frequently necessary to supplement to improve vitamin levels and this can help improve symptoms and important to have OPTIMAL vitamin levels for levothyroxine to work well
Come back with new post once you get vitamin results
NHS only tests and treats vitamin deficiencies
If vitamins are deficient GP will prescribe
If vitamins are insufficient, but within range, you will need to self supplement to improve
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Thyroid antibodies are the hoovers cleaning up after an attack
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done by GP FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Wow that is a massive amount of information. It’s much appreciated - I’ll read this evening. And make an appointment with GP. Thank you so much for replies.
That the tsh is elevated to compensate for the effect of the antibodies
Not exactly, no. TSH is a pituitary hormone that is secreted when the pituitary senses that there is not enough thyroid hormone in the blood. Thyroid Stimulating Hormone, it stimulates the thyroid to make more hormone. But, your thyroid cannot respond, so the TSH gets higher and higher.
The reason your thyroid cannot respond is because it has been dammaged by the immune system attacks on it, reducing the size of the gland and the number of hormone-producing folicules. It's not the antibodies that attacks the thyroid. The antibodies come along after an attack to clean up traves of TPO and Tg that have leaked into the blood. So, there is no direct connection between TSH and antibodies.
This means the levels are subclinical and wouldn’t be treated by gp?
No, that's not what it means. Technically, 'subclinical' means 'over-range TSH but no symptoms'. I'm presuming you have symptoms and that is why you went to see your doctor. And, anyway, over 10 is considered by doctors to be full-blown hypo.
The ranges - reference intervals - are unrealistic, anyway. A euthyroid - normal - TSH is around 1, never over 2, and you are hypo when it reaches 3. In some countries you would be treated at that level. It's only the UK and Canada that insist the TSH has to go over 10 to get treatment.
Even so, with high antibodies, like yours, NICE guidelines say you should be treated when your TSH goes over-range, and not wait until it gets to 10. The problem is, will your doctor accept your private test results - a lot of them won't, for some unknown reason! They want to do their own tests but will not test FT3 or Tg antibodies, which is all totally illogical, but that's doctors for you. But, show them to your doctor anyway, and see what happens. You are very hypo and need treatment.
Ah that makes things clearer thank you. I think I was really holding onto the hope that it wasn’t that bad and would go away. But no, it really is, and I do need help. That and didn’t relish having to push with the doctors. Have bit the bullet and made an appointment with my gp.
No, it won't go away, I'm afraid. It will only get worse with time. But, you can live perfectly well without your thyroid if you find a doctor that knows how to medicate you. I would suggest you read as much as you can on the subject, so that you can counter any obstacles raised by your doctor.
Goose, if it's not the antibodies that attack the gland then what attacks the gland.
I've seen enough videos over the past how many months because if the c-virus showing how antibodies lock on and then other cells come to eat the products.
Here's from Live Science:Antibodies are specialized, Y-shaped proteins that bind like a lock-and-key to the body's foreign invaders — whether they are viruses, bacteria, fungi or parasites. They are the "search" battalion of the immune system's search-and-destroy system, tasked with finding an enemy and marking it for destruction.
When antibodies find their target, they bind to it, which then triggers a cascade of actions that vanquish the invader. Antibodies are part of the so-called "adaptive" immune system, the arm of the immune system that learns to recognize and eliminate specific pathogens
So I don't understand if blood tests are done for antibodies, what are those antibodies doing if it's about lymphocytes. Why are there antibodies if the lymphocytes are the ones that are important?
The antibodies attach to their antigen and raise a flag to say "Lymphocytes - come over here - there's some work for you to do."
There are antibodies to thyroid peroxidase and thyroglobulin because they are substances which simply should not be present in our blood supply. They should only exist within thyroid follicles.
When a thyroid follicle bursts open and its contents get dispersed, that is when TPO and TG are detected by the immune system and the antibodies are ramped up.
Why do thyroid cells get damaged and follicles burst? There lies a major question.
Bear in mind, any injury/trauma to the thyroid gland is likely to see an increase in TPO and TG antibodies. The difference in autoimmune thyroid disease such as Hashimoto's is that the antibodies remain elevated for extended periods - arguably, forever.
I read that viruses can infect the cells and when they reproduce inside a cell, eventually the cell ruptures and viral particles are released. So I guess that could account for some of the reasons for contents of thyroid cells being in the circulation.
There's a Pubmed article I was just reading and about how Hashimoto incidence increases with age. Average age of diagnosis is 35. But over time post menopausal women have a high incidence of hypothyroidism.
It would make sense then that over a lifetime with viral infections that just add up over decades, that the chance of developing antibodies to damaged thyroid increases.
Plus supposedly it's genetic except it makes me wonder how much of it is environmental and first degree relatives spend a lot of years under the same roof, eating the same food, catching the same infectious diseases. If it's genetic, then
maybe it's the same sort of thing as what happens with Coeliac. Having the genes doesn't mean the person gets the disease. Alessio Fasano's clinic had extended family of the patients. Two women in their 70s who had the genetics but not the disease developed it suddenly. He didn't know what triggered it. Maybe it's the same with Hashimoto's.
Have they ever done a twin study with Hashi where the twins are raised separately?
But over time post menopausal women have a high incidence of hypothyroidism.
Isn't that largely a natural consequence of populations?
If the number diagnosed at each age is higher than the number who die at that age (from anything), the number at each age will be higher than that age minus one year, minus two years, etc.
And I strongly suspect the indidence is very far away from the number diagnosed.
Why do thyroid cells get damaged and follicles burst? There lies a major question.
I have a theory which may well be rubbish
Back in the 60s after frequent bouts of tonsillitis, at the age of 3, I had a tonsillectomy. At the time my parents were told that tonsils weren’t needed. We now know that to be bunkum and what they in fact did was remove a part of my body’s “defence” when what needed to be done was to find and remove the cause of my recurrent tonsillitis, which in this case wasn’t too difficult. My parents were heavy smokers (and I mean heavy) of non-tipped cigarettes. My father was a merchant seaman where he learned the habit very well and it seems the pair of them were too daft (no, I’m going to say stupid) to realise that me being in that smoke-filled toxic environment day in and out,
was the cause of my permanent cough and subsequent tonsillitis. In their defence, they were of an era when smoking had been sold to us as being good for us and many fell for that line. It was at a time when marketing was a relatively new concept and people just didn’t realise they were being “fed” nonsense. Yes there was marketing of a kind, earlier, but now everyone had a tv and we were bombarded with adverts selling us the idea that we “needed” these new and wonderful products
My tonsils became ragged and inflamed rendering them vulnerable to infection and so now, with one of the first lines of defence gone, my upper body became vulnerable to whatever virus, bacterium or fungus was floating around. My throat was subsequently always inflamed and sore, I got ear infections, mumps, my parotid glands were always swollen and eventually I got recurrent chest infections and so I wouldn’t be surprised at all if a few or many more follicles burst in my thyroid gland. Not only the constant hacking cough battering down on it, it would also have been exposed (because of its proximity) to all the mayhem going on around it in the form of infections nearby and actually having infections frequently travelling past en route to my chest and so on. Sounds like a daft, mad theory but is it
I believe the final straw was in 1999. I decided to take on a house renovation project and used all sorts of nasty chemicals. One of them being a product called Nitromors. It’s a heavy duty chemical used to remove paint and for about two weeks I laboured with the stuff, slathering it on my staircase, watching the paint dissolve and then scraping it off. The fumes were horrendous and gave me a very sore throat but stupidly (much the same as my parents) I persisted. I had to abandon it as I got really unwell but because I never associated it with inhaling the noxious fumes, when I was well enough I resumed and again got sick, only this time I lost a lot of weight, became manic and sleepless. My GP told me I was perimenopausal, as tests confirmed, and that I might expect worse to come. Never were thyroid tests carried out and I was clueless so didn’t ask. It must’ve occurred to me that I was damaging myself further but if it did, I put it to the back of my mind
It wasn’t until many years later that the penny dropped. It was menopause making me fat, most of my maternal family has thyroid disease …
I’m constantly amazed at the medical profession’s arrogance and ignorance. What a ridiculous thing to say about an organ - “serves no purpose”. It’s the same with T1 and T2. They don’t know what those hormones are for and tell us the body doesn’t need them. How mad and dangerous is that. The body isn’t made up of what it doesn’t need. What an absurd concept. It’s a highly developed, complex and finely tuned system and each and every part of it is reliant upon a seemingly unrelated part of the body, doing its job. Yes, the body can still get along when parts of it go wrong but it’s not at its best and eventually, the faulty part will affect others parts, which in turn begin to falter, or is that faulter
ALL the Ts have a function, We just don’t know yet exactly what they are. Some knowledgable professionals and others have ideas, theories and facts but mostly not so much
I suffered repeated tonsillitis through my childhood - I think something like two serious sessions a year - until something like 11 or 12. Thereafter only a few bouts.
I too had mumps.
I too had a smoking parent.
I am quite sure T2 and T1 have roles - or at least, some forms of them. Though whether there is any basis for taking them (for example, if tablets of them existed) is much more questionable.
Antibodies are specialized, Y-shaped proteins that bind like a lock-and-key to the body's foreign invaders...
Correct. And, the invaders in the case of Hashi's, is the tracs of TPO - hence TPO antibodies - and Tg - hence Tg antibodies - that escape into the blood during an immune system attack.
Why are there antibodies if the lymphocytes are the ones that are important?
It's not the lymphocytes that are important, it's the lymphocytes that do the attacking of the thyroid. The antibodies come along to mop up the mess in the blood caused by the attack. The antibodies are easily tested for and indicate that there are attacks going on. Therefore, you have Hashi's.
The TPO and Tg antibodies seek out the traces of TPO and Tg in the blood, envelope them and take them away for disposal. That's what I mean by 'mop up'. I didn't say anything about 'consuming'. Don't know what you mean by 'the other way around'. What other way?
my (simplistic) understanding is that the antibodies are 'marker labels' which get stuck onto the TPO/Tg in the blood .. saying 'clean this mess up' .. and then 'something else' (insert technical term ) does the actual disposal.
Just realised we are all thinking of it in terms of cleaning and mopping .. I wonder if male scientists think of it in these terms ... or if analogies to mopping the floor are an alien concept to them .....
Probably! lol Doubt they would know much about housework. After my op for a slipped disc that I didn't have, the surgeon said to me, 'now you'll have to do things like cleaning the bath and making the bed on your knees - of course, I don't know how that would work out in practice, because I've never cleaned a bath or made a bed...' I'm happy to say he was wrong, I was perfectly able to make beds and clean baths in the normal way, once I'd recovered!
But, there are other meanings to 'mop up'...
1.
wipe liquid away from a surface with something absorbent.
"a barmaid rushed forward to mop up the spilled beer"
(Note: barmaid, not barman!)
2.
complete the military conquest of an area by capturing or killing remaining enemy troops.
"troops mopped up the last pockets of resistance" (which is more in keeping with our antibodies)
I’m trying to follow the thread but it’s become too technical for me. So, for simplicity’s sake are the following statements right:
TPO is an enzyme within the thyroid gland concerned with the production of thyroid hormones
TPOab is a protein; an antibody made by the immune system in response to an antigen - a substance the body doesn’t recognise and which can be external (chemical, viruses, bacteria, others) or it can be internal BUT these same antibodies (TPOab) can also become deranged and attack the gland thereby damaging it and affecting its ability to function properly; gradually rendering the gland less able to utilise iodine for the production of thyroid hormones
So far so good (maybe) but here’s where I get more confused. Some sources say that TPOab attacks the enzyme TPO and some say it attacks the gland
Also, white celle are predominantly concerned with infection control. When we talk about TPOab, is it a type of white cell? A lymphocyte, B cell, T cell thing? T cells being the part that indirectly “activates” macrophages which engulf the dead tissue and remove it
BUT these same antibodies (TPOab) can also become deranged and attack the gland thereby damaging it and affecting its ability to function properly;
No . they don't become deranged and attack .
They just 'are '. They do what they do .. if there is a little TPO in the blood they will attach to it. If there is lots of TPO in the blood , the body will make more and more antibodies to stick to it.
There aren't any rogue ones.
You will often read in all sorts of research papers / articles that they do 'attack', but it's just because to explain the process properly is far too complex for most places where this is written. or sometimes because the article is too old to be up to date with understanding.
It is the immune system that damages the thyroid .. not the antibodies.
one it's been damaged then the antibodies stick onto any TPO that ended up in the blood as a result of the attack .
(I Think it is Lymphocytes that do the actual attacking of the thyroid gland , but would have to check my facts on that one)
TPO is protein-based but its importance is as an enzyme. It manages some steps in manufacturing thyroid hormone inside the follicles of the thyroid gland. It isn't any sort of body - just a molecule of protein.
An antibody binds to an antigen. To an amazing degree, antibodies are extremely specific. That is, a TPO antibody attaches to TPO and nothing else.
An antigen is a substance that the immune system DOES recognise. The immune system has cells which can manufacture huge numbers of antibodies. Specific cells produce specific antibodies.
(When first that substance is detected as something alien, the immune system produces antibodies to it. From then on, that substance will be recognised.)
it's just because to explain the process properly is far too complex for most places where this is written.
Lol, do you mean too complex for most people? And please don’t take offence, I’m just being self-deprecating
So have understood any of this because even your simplified explanation seems too much for me. If you just point out please, what I did get right, that’ll be enough for now
"TPO is an enzyme within the thyroid gland concerned with the production of thyroid hormones" ~ nearly correct ~ it's made out of protein, it is found inside the thyroid gland, where it works (as an enzyme? )to make thyroid hormones .
"TPOab is a protein; an antibody made by the immune system in response to an antigen - a substance the body doesn’t recognise and which can be external (chemical, viruses, bacteria, others) or it can be internal " ~ nearly correct ~ i don't know if it's a protein , but it is an antibody ,made in response to an antigen . (in this case the antigen is TPO .. which is 'alien' cos it should not be in the blood , it should only be in the thyroid gland.) .... the first time the immune system meets an antigen it makes some specific antibodies to it ,and 'remembers' both the shape of the antigen and the recipe for making those specific antibodies in case it needs to make them again in a hurry .
From then on .. if the immune system meets that antigen again . it DOES recognise it and can now make lots of antibodies to it very quickly .
"Also, white celle are predominantly concerned with infection control. When we talk about TPOab, is it a type of white cell? A lymphocyte, B cell, T cell thing? T cells being the part that indirectly “activates” macrophages which engulf the dead tissue and remove it" ~ i don't know ... it's above my level of understanding ..... but i suspect from something diogenes once replied that we can't directly apply how the immune system works when dealing with infections to how the AUTOimmune aspect works when attacking us by mistake .. I think he said something about it being a different part of the immune system.
Can you clarify please greygoose as I’m not sure I understand. Probably because I’m incredulous at those figures
Are you saying that with the exception of GB and Canada, everywhere else in the world would consider a TSH of 3 to be indicative of hypothyroidism but that here in the UK our doctors wait until it reaches a hefty 10? Did I hear that right?!!
As far as I know the UK and Canada are the only countries that insist on a TSH of over 10 before doctors will diagnose, yes. Even though the range never goes up that high.
Other countries have their own cut-off point. In some of them it's three, others when it's just over-range whatever the top of the range may be. In France it's 4.5, usually.
So here where I live the range is 0.35 - 5.5 mU/L. Is it the same for all of the UK and the one to which you refer when you say levels of TSH have to reach 10
TSH ranges vary enormously in the UK, I've noticed. I've seen them as high as 6 or 7, and as low as 4.something. I've never seen one that actually went as high as 10, but doctors have been told not to diagnose hypô until the TSH reaches 10. And, that's the thing about doctors and ranges! They only stick to them when it suits them, not when it helps the patient!
The extremely high numbers we used regularly to see have largely disappeared. There has been progress towards harmonisation of TSH reference intervals but we are still a long way from true harmony.
There was a recognition more than ten years ago that some reference intervals were set using subjects who might have had thyroid disorders - they did not rigorously exclude such people. That was a significant step.
And at least two rounds of improvement since.
Still not satisfactory.
Indeed, reducing the top end of the reference interval makes 10 a relatively higher level to reach. And there is insufficient proof that all TSH assays give a result over 10 consistently. That is, whether you reach that ridiculous threshold depends on who made the test, etc.
Largely disappeared but not completely. It all makes a mockery of 'do no harm' anyway. I wonder if they ever think about the harm they're doing. Or are they too ignorant to understand?
They have disappeared from the big NHS labs. But they could still be in use in various corners of the UK's health systems. And we see results from round the world which could well include prehistoric reference intervals.
And it took a few years from seeing USA TSH reference intervals shrink before the UK followed. Very unsatisfactory as it was pellucid that there were issues.
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