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[cindirellagirl]

I have been feeling really unwell for aver a year now my doctor done some test and my tc3 td4 and tchaikovsky came back normal bytes my antybodies were nearly tripled but she said there is nothing wrong.has anyone had it and the doctor refuse to help.

[shaws Administrator]

Welcome to our forum,

Do you live in the UK? Always get a print-out with the results of your blood tests and they must have the ranges, otherwise members cannot help.

I am responding re your high antibodies. These should be treated by levothyroxine and you should email [e-mail] and ask for a copy of the Pulse Online article by Dr Toft who was President of the British Thyroid Association and give to your doctor.

Highlight question 6 (I believe) and within it states if we have antibodies we should be given levothyroxine.

Antibodies attack your thyroid gland, sometimes too many and at other times too low till you become hypothyroid.

When you have a blood test for thyroid horones it should be the very earliet possible, fasting (you can drink water) and allow a gap of 24 hours since your last dose of levothyroxine and the test. The doctor should also test your B12, Vit D, iron, ferritin and folate because if deficient we get symptoms too.

Ask for a copy of your most recent blood test results and post them. Remember to put the ranges.

[cindirellagirl in reply to shaws]

Yes thank you I will

[Clutter]

Welcome to the forum, Cindirellagirl.

Elevated antibodies means you have autoimmune thyroiditis (Hashimoto's). Because TSH, FT4 and FT3 are within range it is known as euthyroid Hashimoto's.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

[cindirellagirl]

So there is no medication to stop it or help me should I just eliminate gluten

[Clutter in reply to cindirellagirl]

Cindirellagirl,

Use the green reply tab and the member you are replying to receives a notification that you have responded.

There is no medication for Hashimoto's but eliminating gluten may help with symptoms.

[shaws Administrator in reply to cindirellagirl]

This is an excerpt from Dr Toft's article which was in Pulse Online. You can get a copy from Louise Roberts - email [e-mail]. He is an ex President of the British Thyroid Association:-

"2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?

The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration. "

Considering that in other countries we'd be diagnosed if TSH was 3+ and prescribed but in the UK it is 10. This is an excerpt from another doctor's view (deceased now):-

"I have very high thyroid antibodies, but my TSH, T4, and T3 are normal. I have many hypothyroid symptoms and my basal body temperature is extremely low, usually 96.7 degrees Fahrenheit (35.94 degrees Celsius). But my doctor says the antibodies aren’t important and that I don’t need to take thyroid hormone. Do you agree with him or not?"

My answer is always the same: I resoundingly do not agree with the doctor. First, as my wife Tammy recently said, consider the prefix to the term "anti-bodies." The prefix means "against," and just like anti-freeze prevents your car’s radiator from freezing, anti-bodies against your thyroid gland, if they stay high, will, sooner or later, prevent the gland from working normally. Your symptoms and your extremely low basal body temperature strongly suggest to me that your gland is already impaired.

How do we know if the thyroid gland has been damaged? Not necessarily by measuring your TSH, T4, or T3 levels. The levels of these hormones may be in range or out. The blood levels just aren’t reliable enough to tell us whether a person has sufficient thyroid hormone for his or her cells to function normally. The endocrinology specialty and its corporate sponsors wish with all their might that these tests were the ultimate gauges. But, alas, they definitely are not!

The TSH, T4, and T3 levels vary dramatically every thirty minutes.[1][2][3][4] Because of this extreme variance, unless the levels are far out of range, they are inaccurate criteria for inferring whether your tissues have enough thyroid hormone regulation. I have done hundreds of measurements of patients’ resting metabolic rates. Some patients were taking thyroid hormone and others not. For patients with low metabolic rates, I’ve done differential diagnoses to learn the most likely cause of the low rates. The most likely cause for most of them has been too little thyroid hormone regulation. I know from statistical analyses of the data from these evaluations that the TSH, T4, and T3 levels do not reliably predict which patients do and do not have too little thyroid hormone regulation.

thyroiduk.org.uk/tuk/about_...

[Etje1979 in reply to cindirellagirl]

No gluten, no sugar or sweetners( I only use honey or maple syrop) and no soy have helped me a lot with the symptoms. I also drink a cup of kefir every day, I make my own. There is a fb page called @hormones balance. It helped me a lot to get my symptoms under control. I had hashimoto for 8 years now and I'm finally feeling better. I hope you find your way. X

[Etje1979]

Ask for a print out of your blood results. Your TSH should be between 0.5 and 2. And your free t3 and free t4 in the top half of the reference range. If my TSH is above 2 I tell me Doctor to up my Meds. Because if I'm over 2 I feel horrible.

[cindirellagirl]

Just spoke with the doctors and they said despite my antybodies being high is nothing wrong with me becouse my tc3 tc4 and tchaikovsky are normal

[humanbean in reply to cindirellagirl]

Yes, that is what lots of people are told by doctors. It doesn't necessarily make it true though.

You have to accept that your best chance of feeling well with autoimmune thyroid disease is self-help.

1) Ask your doctor or the receptionists at the surgery for copies of your blood test results for thyroid and any nutrients, including the reference ranges. Even if thyroid hormone levels are in range you can easily get symptoms from levels which are low in range. Once you have the results - you may have to ask one day then go back another day for them to be printed out - copy them into a new post and ask for feedback.

2) With autoimmune thyroid disease, even if your thyroid hormone levels are well in range, you can still get symptoms from high levels of antibodies. Doctors ignore them. You don't have to. To lower the antibodies you need to a) go gluten-free and b) supplement 200mg selenium per day. These are two things you can do which patient experience has found makes them feel better, and you don't need your doctor's approval or permission.

3) You also need to optimise your nutrient levels. The most important ones for most of us are iron, ferritin, vitamin B12, folate and vitamin D. Getting these levels up to optimal make a huge difference to most of us. Many hypothyroid people suffer from deficiencies in these.

[Asarahjohnson in reply to humanbean]

do you have any tips on getting ferritin levels up? I've been taking ferrous fumarate bd for over a year and am still slightly anaemic and ferritin about 25.Have lupus and am gluten intolerant. In gluten free, dairy- free (because they cause me to flare), refined sugar free vegetarian diet.

Been to haematology before and they checked zzp (about 9months ago) and was normal. They said I had a functional iron deficiency and iron infusions therefore won't help. Take fe with vitamin c and folic acid. Sometimes I have thyroid antibodies then they go. Hair falling out and fatigued. Tsh 4.02.

Any advice?

[humanbean in reply to Asarahjohnson]

I've never heard of a "functional iron deficiency" so I had to google. It seems to be something which often causes Anaemia of Chronic Disease. But in that condition ferritin is usually normal/high whereas yours appears to be quite low.

These pages might be useful :

injectafer.com/about-ida/ab...

onlinelibrary.wiley.com/doi...

It would be worth asking for copies of any blood tests that were done by haematology to come to their conclusion. Do you have any recent results?

What dose of ferrous fumarate are you taking? Is it ferrous fumarate 210mg?

Are you vegetarian or vegan?

[Asarahjohnson in reply to humanbean]

They didn't pay too much attention to the ferritin level as they checked zinc protophorphyrin which was normal tho this was last year. I'm vegetarian tho don't do dairy as it causes flares of the lupus - mainly joint pain. I take ferrous fumarate 210 twice daily.

I have always had a macrocytic blood picture so they were pretty convinced I could not be iron deficient.

[humanbean in reply to Asarahjohnson]

About the macrocytosis - that is usually caused by low levels of vitamin B12 and/or folate, or may simply be caused by hypothyroidism.

Iron deficiency might cause microcytosis.

But what would they expect to see if you had low iron, low B12, low folate, and hypothyroidism? The size of your red blood cells could be small, large, or completely normal, and it wouldn't tell them anything conclusive.

And one thing the NHS loves to do is claim that B12 and/or folate anywhere in range, even rock bottom in a very low range, is "normal". Have you ever had B12 and folate levels tested? What were the results?

Ferrous fumarate 210mg is what I took for iron deficiency. I was prescribed one, three times a day by a doctor, but the doctor wouldn't prescribe more than once, so I started buying my own. It is easy to get online or in pharmacies in the UK without a prescription. It is at the pharmacist's discretion though. If you get refused, just go to a different pharmacist. I got them from Tesco and Lloyds pharmacies.

It took me nearly two years to get my levels up to optimal, taking three ferrous fumarate every day, but I got there in the end. With each pill I took 500mg - 1000mg vitamin C which helps absorption of the iron. Even after I got my levels up to optimal I still had to take a maintenance dose of 1 tablet ferrous fumarate per day. But the longer I last with normal iron levels the better I seem to be at holding on to it. I'm only supplementing iron occasionally now.

One pill of ferrous fumarate 210mg contains 69mg of pure iron. Three pills per day will contain 207mg of pure iron. You should consider that to be the maximum. With any kind of iron supplement it is essential to know how much iron you are actually taking. One example at the low end of the scale is Spatone - sachets of water infused with iron. They contain only 5mg of iron per sachet and very few people raise their levels with it.

If you want to try a different type of iron supplement then you could try ferrous sulfate 200mg. It contains 65mg iron per pill.

Ferrous gluconate 300mg contains 35mg pure iron per pill.

Or there is ferrous bisglycinate or "Gentle Iron" which contains about 20mg - 25mg iron per pill.

Strangely enough, some people raise levels more quickly with ferrous bisglycinate than they do with the more heavy duty supplements. I don't know why and I've never tried it myself.

Some links :

evidence.nhs.uk/formulary/b...

It is absolutely essential not to overdo iron supplementing, because iron is poisonous in overdose, and testing should be carried out fairly regularly while supplementing.

Some useful links :

rt3-adrenals.org/Iron_test_...

medichecks.com/iron-tests/i...

medichecks.com/anaemia-test...

[Asarahjohnson in reply to humanbean]

Thanks for that. I hadn't thought about hypothyroidism causing macrocytosis. I've been taking biotin for ages. Maybe that might have altered the tsh result? B12 and folate r not low tho. They keep checking it all.

It odd tho, after saying my iron levels were normal, they told me to keep taking it twice daily.

I get the iron tabs from Amazon so no problem.

[humanbean in reply to Asarahjohnson]

Biotin might alter the results of Thyroid Function Testing. It's been discussed on here a few times.

healthunlocked.com/thyroidu......

Taking iron twice daily isn't really raising your ferritin by the look of things, but we can't tell what is happening with your other iron-related results. Since you might have this unusual form of iron deficiency I wouldn't be happy to suggest you must take more iron, particularly without seeing far more test results relevant to your problem - I simply don't know enough one way or the other.

In my own case I had dreadful iron deficiency. I knew this was true because I had had a significant GI bleed for several years. Despite this I had/have a TIBC level which is always either very low in range or below range. And according to everything I've read, low TIBC indicates I have plenty of iron. This was so clearly nonsense under the circumstances that I ignored it and supplemented anyway. My TIBC rose a bit (the opposite of what should have happened), then eventually dropped again. The moral of this is that sometimes you can't explain everything and you have to do whatever feels right in the circumstances. But doing this must be done at one's own risk, and care should be taken to minimise whatever risks we decide to take. For example, getting regular blood tests done would be a good place to start.

[Asarahjohnson in reply to humanbean]

Do you know if low calcium levels are related to hypothyroidism?

[humanbean in reply to Asarahjohnson]

I'm not sure if there is a direct relationship.

For the body to be able to absorb calcium you need good levels of vitamin D, and lots of people with hypothyroidism have low vitamin D.

See this link :

en.wikipedia.org/wiki/Vitam...

Note the first paragraph particularly.

And this link is worth reading :

vitamindcouncil.org/about-v...

If you haven't had vitamin D measured recently you could ask your doctor to do it (he might refuse because its an expensive test) or get it done with finger-prick testing :

vitamindtest.org.uk/index.html

Once you have a result post it in a new post and ask for feedback.

[humanbean in reply to cindirellagirl]

Oh, and another thing.

The things that may have been tested were probably Free T4, Free T3 and TSH (Thyroid Stimulating Hormone). There is no such thing as tchaikovsky in the body. Tchaikovsky is a long-dead composer.

[Nicki24110]

My dr said I had to wait until my other tests were out of the normal range before he'd do anything. I'm going for a second option on Tuesday