Hi - I have been recently diagnosed with auto immune disease, what that means I have no idea. I have seen top professor who seemed uninterested in me or my symptoms. I have a number of symptoms: migraines, very dry skin, falling hair, tiredness, bloated, heavy legs , water retention, loss of libido etc… this is all in the last couple of years. After deciding to see endocrinologist he did all the tests and come back with this:
“There is autoimmune thyroid disease and previously a borderline FT4 but excellent FT3 and TSH.
We will now embark on a trial of Thyroxine 50 μg a day for 3 months. The thyroid function tests were checked today before starting and these came back later at FT4 15.6 pmol/l, FT3 5.2 and TSH 1.45 mu/l.”
I have no idea what that means. I have not started medication because he was so reticent to give it to me and ideally wanted me to come back in February and do the blood tests again but I said that I need help with my symptoms and than he decided to give me some medication. I feel like I have been just brushed off and therefore I did not start medication as I have no idea what my results mean. Any help I would appreciate so much. Thanks very much!
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Viio3
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I'm afraid it's difficult for us to help you understand them without seeing the ranges (in brackets, usually, after the result). Ranges vary from lab to lab, so we need those that went with your results.
All I can tell you is that, at the moment, your TSH is euthyroid, but that doesn't mean much because when you have Hashi's (autoimmung thyroiditis) levels can jum around. But, if you have high antibodies and symtoms, then it's right to start thyroid hormone relacement (levo).
Don't worry about him being reluctant, etc. If there's one thing a doctor hates, it's diagnosing and treating hypothyroidism, and they will do anything to avoid it! That doesn't mean you don't need it, though.
What he has given you is not 'medication' in the normal sense of the word. It is not a drug, it doesn't cure anything. It is just a hormone to relacement hormone your thyroid can no-longer make enough of to kee you well.
A brief run-down of Hashi's:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the theory is, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Omg thank you so much. That’s so helpful. Yes I must dig out the blood results that he did two weeks before he re tested them again as I complained. And the results above are those of re testing.
I have done hormone tests for the last couple of years (I am peri meno) which complicates things.
Well, those labs shed no extra light on the situation because there's nothing that relates to thyroid on there. What we need are the ranges to the results you've already given above - those are thyroid labs, but we can't interpret them without the ranges.
Well, he didnt diagnose it from those results. He must have done antibody tests. I didn't notice thyroid antibodies among those results, but they aren't very easy to read, so I must have missed them. But, you did have high ANA, which is a general antibody test, not specific to thyroid, but if that is high, and you have symptoms then it's not difficult to surmise that you have autoimmune thyroiditis.
Your TSH isn't high, it's true, but that's not the most important number because it isn't a thyroid hormone. But your FT4 was only 36.61% through the range, which is low - euthyroid is around 50%. Your FT3 was higher - 56.67% - but that often happens when the thyroid is struggling to make hormone. It increases the amount of T3 - the active hormone - it produces at the expense of T4, to save energy and effort.
So, all in all, sounds as if this man knows what he's talking about. He knows it's only going to get worse with time - certainly won't get better! - so why wait. As you have symptoms, you might just as well start treatment now, and save a lot of suffering.
My apologies. I just enlarged your photo and found the TPO antibodies - Thyroid Peroxidase antibodies - and they are very high. So, that's how he diagnosed Hashi's. The ANA was actually low, so don't worry about that.
"He must have done antibody tests. I didn't notice thyroid antibodies among those results, but they aren't very easy to read, so I must have missed them. But, you did have high ANA..."
greygoose i have deciphered results in image titled 'pg 2' (with the aid of a magnifying glass...)
TPOab positive 257 (above high normal) [range <60]
TSI (thyroid stimulating immunoglobulin) .
(slightly) above high normal 0.112 [range <0.1]
(Normal <0.1 / >0.55 is 99.7% specific for graves disease)
Antithyroglobulin Ab (TGab) < 20 [range <40]
p.s
The ANA on pg 2 are actually negative 0.3 [ <1 negative , 1 -1.2 borderline , >1.2 positive]
So Viio3 ,the reason for your diagnosis of autoimmune thyroid disease is the raised TPOab ...
and interestingly, you also had a very slightly higher than normal level of the TSI antibodies that cause graves disease , .. whether this indicates anything for your condition is hard to say .. it might be that lots of patients with autoimmune hypothyroidism have a few of these, but we are not normally tested for them.
(Some people do have Graves hypethyroidism AND hashimoto's hypothyroidism at the same time... they can sometimes balance each other out...the hashimotos damages bits of the thyroid so it can't produce as much T4 /T3 , but the TSI antibodies make undamaged bits of the thyroid produce more T4/3)
Thank you sooooo much. This is super helpful and once my kids go to bed I shall be making notes and looking into it in more detail. I am extremely grateful for all your help.
The question is should I go private or nhs… and who is best treating under active in London. I feel like I need someone that cares how I actually feel rather than leaving me with tests and no treatment…I know it doesn't feel like it emotionally . but honestly , in practical terms think you've had a better result so far from this endo as you would expect to get from most.
He's done a very full set of antibody tests .. most of us would never get to find out we had any TSI antibodies.
He's looked at these antibody results and your symptoms and agreed to give you a trail of treatment with Levo .... most endos , 'world class private' included ,would not agree to this yet ..... no matter what your symptoms are.... because your TSH /fT4 /fT3 results are still so good .
So there is nothing more another Endo could practically do for you at this point .
They will all accept that raised TPOab mean there is more chance you will eventually become hypothyroid according to blood results (high TSH /low fT4) ... but hardly any will agree to treat with Levo before at least the TSH is raised ... so, in that sense you already have seen 'one of the best.'
They can only treat the resulting hypothyroidism . which he has , by prescribing Levo .... there is no treatment for the autoimmune cause.
Be prepared for the fact that 50mcg is unlikely to be enough to make you feel fully well.... the thyroid may compensate for it's addition by making less of it's own T4 , so you usually have to increase in 25mcg 's at a time until on a full replacement dose... and this takes months.
But see how it feels after you've taken it for 6 weeks .. you may feel an improvement . for a while at least .... ( but be warned .. if you go back and say "it's made no difference at all" .. he may well take it off you altogether instead of increasing it... as he is already treading a fine line by prescribing it to you before your TSH /fT4/fT3 show you need it.)
Thank you that is fantastic advice. I really appreciate it. I will consider it and of course re think it all. Might stick with him and see what he says. I now understand why he acted like that and initially didn’t really feel like he wanted to give me anything…. So depressing it’s kind of just waiting for the downward spiral and being in peri meno doesn’t help either
lol 'twas one of 'those' .... you know the ones... where something wasn't there when i started writing, and was there when i posted .... mind you i did wander off into the kitchen to find me magnifying glass .. and that might have taken half an hour cos i 'tidied up' some stray biscuits while i was in there ..
I am not sure if anyone clarified the Graves' and Hashi's antibodies occurring together. I didn't do any research. However, a D.O. (who tend to look at the entire picture and thus tested me for a lot) caught my thyroid problems very early on. I had to go straight to NYC after that to work, so she advised me to see an endocrinologist there.
I went to one at Mount Sinai. He was a total ***/white privileged man who should not be a doctor. He accused me of just having 'women's problems.' I was 33. Not even sure what that meant - I was pretty sure that after 20 years of having 'women's problems' I knew the difference between a 'woman's problem' and something being wrong. He subsequently told me all about the weekend he was going to spend with his grandchildren skiing in whatever fancy resort in upstate New York (apparently he did not realize the appointment was about me, not him). Following my D.O.'s advise, I demanded antibody and hormone tests and he gave in only because I was some 'disturbed women' who apparently needed to be comforted by tests. He clearly pitied me. Ehh ... 'no doctor, I need tests because I spent December in Texas with 7 sweaters on...' He even told me in an email after my TSH, T3, and T4 came back 'see, I was right, your hormones are perfectly fine' (he basically confirmed that I was a woman, with women's problems, panicking about nothing - it was very 1920s of him).
The antibody test came back a week later. And he basically wrote an email with his tail partially between his legs 'oh, something is wrong.' Not really an apology. The test showed my antibodies indicating Graves' disease were elevated. For a year I thought I had Graves. He didn't tell me much else.
Long story short...
I subsequently went to Colorado. I told a new endo there that I had Graves. My new endo subsequently told me that we would have to test whether it is Graves' or Hashimoto's. She said that at the very beginning during inflammation often both antibodies indicating Graves and Hashimoto's are elevated.
So, if she is correct, it may be that you are still at the 'beginning-intermediate stages' of the disease, showing elevations of both. Your Hashi antibodies are way more out of range though... so you would primarily treat that.
Your symptoms also sound more like hypo than hyper symptoms to me. However, as greygoose indicated... you will have hypo and hyper swings. You probably already had them. During my hyper periods I always had a lot of anxiety, nausea that wouldn't go away, and weight loss (and fatigue of course). I normally can't concentrate for more than 5-10 minutes when I feel hyper, and I will have heart palpitations. During my hypo periods I feel depressed, can't get of the couch, can gain weight rapidly, etc...
If you think about the past 2 years, you probably know that you have hypo symptoms now. So, it is absolutely fine to start with levo.
I would start with 25 mcg T4 though, for at least 2 weeks. You'll probably feel better for a couple of weeks, and then that effect will fade. That's when I would go up to 50 mcg T4.
Note down somewhere how you feel from day to day or week to week at least! It is really easy for a 'Hashi's brain' to forget how you feel because everything tends to be a blur anyway. You get used to it, and if you're like me, you'll tend to 'downplay' your symptoms... while you should never do that, because it is really hard to convince doctors to up your T4, or - in my case - add T3 to the mix.
Oh, and something else. My TSH has never gone out of range on the 'hypo' side. I would have super high Hashi antibodies, all the symptoms on the book, and all hormones in range. It doesn't matter. If you have high antibodies and all the symptoms on the book, you need treatment. My endo decided to treat me 'based on symptoms' and the fact that I clearly have Hashi's. It seems your doctor is doing the same.
Hi thank you so much for sharing your story. You have helped me further understand bits of the picture. I am still learning what hypo and hyper phases are… my children are small so I am busy and no depression or anxiety or sleeping issues here as I get tired but I definitely have odd feelings of “can’t really be bothered to move today or do much…” which is so unlike me. I also do have brain fog and at one stage was worried my brain 🧠 has some sort of disease as I realised that I kept forgetting things and couldn’t concentrate much. However, I am also doing a degree and I last year achieved first so my husband said “your brain can’t be bad look at your results” but my brain is really bad! Hopefully in time with the right medication things will improve…. Thank you x
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 too
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
Looking at previous post you have had high TPO antibodies confirmed
Have you had vitamin levels tested
Or coeliac blood test yet?
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Hi SlowDragon, quick one - I've seen this mentioned several times throughout various discussions re blood tests, eating, drinking and last dose. My Eltroxin was upped last consultantation and I was put on thybon, I've booked a blood test for next week. I want o find out whether the meds and dosage are working, do I not want to have taken the meds that day?!
Bloods should be retested minimum of 6-8 weeks after any dose change
How much levothyroxine and do you normally take levothyroxine waking or bedtime
how much Thybon
Do you normally split the T3 into 2 or 3 doses spread through the day?
all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
On day before blood test, split T3 into 3 smaller doses, at roughly equal 8 hour intervals, taking last 1/3rd of daily dose approx 8-12 hours before test
What vitamin supplements are you currently taking
If taking any supplements that contain biotin stop these a week before ALL BLOOD TESTS as biotin can falsely affect test results
If testing iron levels, stop iron supplements a week before testing
Only do private testing early Monday or Tuesday morning and then post back via tracked postal service
Wow. There's so many factors! It's like rocket science, honest to god! And I'm a teacher haha. I take 20mg thybon in the morning, and 75mg Eltroxin around 11am so I'm not eating befor or after.
I've emailed my doc to ask but the secretary isn't the quickest to respond so possibly won't have an answer before Tuesday. Blood test booked for after work and I have to travel so 16.30!
On zinc, selenium, vitamin D, ferritin and b12 were all okay last test.
SlowDragon thank you so much. That is such helpful information. I will add all this info on my list so when I go to my gp I will ask him for those tests. The question is should I go private or nhs… and who is best treating under active in London. I feel like I need someone that cares how I actually feel rather than leaving me with tests and no treatment… thank you so much again
So you have high antibodies this is known by medics here in UK as autoimmune thyroid disease.
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 a further 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 FIRST just to rule it out …ideally via GP
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.
Hi Vilo3 the general consensus is that noone knows why autoimmune diseases are on the rise or the cause of them .but autoimmune disorders are more common in women than men so hormones play a large part , are you menopausal if so your hormones are decreasing and whilst you may need estrogen it is progesterone- natural progesterone- that will calm down autoimmune issues, when women are pregnant their autoimmune disorders often go into remission this is due to progesterone, did your endocrinologist test your hormones ?
Natural progesterone cream is great for dry skin and hair - dry skin is a symptom of low progesterone
Thank you that’s quite accurate I have always had progesterone issues and when I was pregnant with my twins I had progesterone injection up to 20 weeks of pregnancy.
Women have a more reactive immune system, as well as hormonal its the way we are made, the XX chromosomes we have makes our immune system stronger than men's but also more sensitive and liable to go into overdrive.
Scientists believe its an evolutionary advantage to protect the future of the species as women are responsible for having babies. We are far more likely to get autoimmune conditions than men.
Interestingly far more men have died or suffered from serious covid complications, but women are far more likely to end up with long covid. As that is an autoimmune condition.
That’s very interesting actually. I wonder whether there is a way around gluten free diet. For me gluten free is super hard it’s like saying I have lost a part of myself, although I eat really well and never eat processed food etc….
Was this an endocrinologist you saw or an immunologist? Because there was a thorough antibody screening done for all manner of autoimmune diseases which is unusual for an endocrinologist. At least many potential causes for why you feel the way you do have been crossed off the list, which is good.
Without the antibodies that indicate Hashimoto's your test results would be entirely fine.
But given as Greygoose explained, your thyroid will gradually stop functioning adequately.
It's good that you have been diagnosed at this stage and not sometime when you are halfdead and your pituitary gland is mass producing Thyroid stimulating hormone to beat a thyroid gland that is no longer capable of responding.
Probably you need to explore the possibility of using progesterone/estrogen replacement at this time. To be honest, I've been using HRT since I was perio-menopausal and whenever I thought maybe I could do without, it was not a good experiment.
In 1900 only 5% of the population was age over 65. Now it's over 17%. If that's because there were just so many young people or because not that many people made it past that age, I don't know. But nowadays the percent of the population over age 65 is very high and doctors have to adjust to the fact that there are many of us who want to have a good quality of life. The doctors are getting older too so its also in their own best interests.
If that means HRT, then so be it. Not every woman needs or wants it but there are those of us who benefit immensely. Whatever anyone says, it's still a man's world and women are expected (although I'm seeing human rights activists for women who are experiencing disabling symptoms from going through menopause in the UK) to go to work and be competent. Sleep deprivation due to hot flashes is disabling.
Thyroid autoimmunity (Hashimoto's) means that your body is attacking the tissues in your thyroid gland. If it continues for a long time, you will lose thyroid function. The standard response in allopathic medicine is to give levothyroxine, to reduce the stress on your thyroid's production. However that does not stop destruction completely.
Hashimoto's is often caused by environmental factors, including diet. In my case, my TPO antibodies went away when I deleted gluten from my diet. (Gluten had caused severe enteropathy; my digestive system was barely working.) You need to find a naturopath, or MD who is expert in environmental causes of illness, who can go looking for what it is that is triggering antibodies in your system.
Thank you that’s very helpful. I am suspecting that my twin pregnancy was the factor in this somehow. I also found it hard to get pregnant as they discovered my progesterone was very low and through my pregnancy until 20 weeks I had to have progesterone injections to keep the pregnancy going…. Non of that made too much sense at the time nor did I worry to much beyond keeping my babies however, now looking back it may have been the start of something… it may be that my hormones were then dis regulated…
I am currently trying low carb diet but I feel so faint as it pushes my blood sugar even lower than it already is so I am not sure how that will work. I guess I just have to be sensible and listen to my body….
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