Confused - why are my antibodies still so high?

[Tristy]

I've recently had blood test and pleased the T3 level has started to go up. However, I don't understand what makes the antibodies rise. I'm strictly gluten free, all vitamins are optimal including Vitamin D, B12, Folate. Supplementing with selenium, vitamin C, B12, Folate, K2, Vitamin D, Magnesium. When I was first diagnosed they were a lot higher but they are still quite high. I am taking 150mcg Levothyroxine daily.

Latest results - April 18

TSH 0.60 mIU/L (0.27 - 4.2)

Free T4 16.1 pmol/l (12.0 - 22.0)

Free T3 4.4 pmol/L (3.1 - 6.8)

Thyroglobulin Antibody * 1352.0 IU/mL (0-115)

Thyroid Peroxidase Antibodies * 117.0 IU/mL (0 - 34)

Results Feb 18

TSH 0.67 (0.27 - 4.20 mIU/L)

Free T4 13.00 (12.0 - 22.0 pmol/L)

Free T3 3.45 (3.1 - 6.8 pmol/L)

Anti-Thyroglobulin Abs H 1124 <115 kU/L

Anti-Thyroidperoxidase abs H 108.0 <34 kIU/L

I am feeling a lot better than I was but can't help thinking that the high antibodies are causing some symptoms.

Any advice would be grateful.

[SlowDragon Administrator]

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you did the test?

If so, your results suggest you are under medicated

FT4 should be near top of range and FT3 at least half way in range

Perhaps ask GP for small dose increase. Either 12.5mcg or 25mcg daily

Have you had vitamin D, folate, ferritin and B12 tested

[Tristy in reply to SlowDragon]

Hi SlowDragon, yes test was done before 9am, didn't take Levo for 24 hours beforehand. Had no breakfast, just water. I am seeing Endo this week so will ask for small increase. Vitamin D, ferritin and B12 results are:

Vitamin D (25 OH) 135 Deficient <25 nmol/L

Vitamin B12 H 900 Deficient <145 pmol/L

Ferritin H 163.(0 13 - 150 ug/L)

Serum Folate 32.40 (8.83 - 60.8 nmol/L)

Is it possible the increase in Levo might help reduce antibodies too?

Thanks for your help.

[SlowDragon Administrator in reply to Tristy]

Your TPO are falling slowly, very likely because gluten free

Mine are dropping at similar rate. 2 years gluten free, now down to 70-80

TG antibodies seem to go down as Levo dose increases and TSH falls.

Your vitamins are good

Does your endo recognise gluten as linked. Mine does now, I put all blood test results on spreadsheet since going GF. Clearly shows lowering TPO at every test since.

[Tristy in reply to SlowDragon]

My endo doesn’t really know a lot. I once asked him if he would re-test my antibodies (at the same time as doing other thyroid bloods) and he said there wasn’t much point as once you’ve got them there’s nothing you can do about it. I then tested them myself with Blue Horizon. He really doesn’t know much about hypothyroidism and hashimotos, the only reason I go back to him is because he agrees to increase the Levo and my GP won’t without his instructions. I think he knows now that I know more than him about it. It’s a amazing how little he knows.

It’s good news about your antibodies lowering, let’s hope mine go the same way.

Thanks SlowDragon.

[SlowDragon Administrator in reply to Tristy]

The fact they never test antibodies more than once, they will never learn that gluten (and sometimes dairy) has reducing affect for very many.

[ShootingStars in reply to Tristy]

Hi Tristy. Your doctor is partially correct. There is not a lot you can do to lower antibodies because some of what causes it to increase or remain high is unpredictable or uncontrollable, and there is no exact science to lowering antibodies.

On the other hand, testing antibodies can tell you how much of an attack your thyroid and body are experiencing, and this information can be very helpful in trying to mitigate additional damage. Antibodies increase or remain high due to all sorts of influences. Exposure to any sort of stress, cold, virus, food allergens, bacteria, fungi, environmental toxin, mold, pollen or other allergens can increase your antibodies. Basically, anything that causes your body stress, that it has to fight off, or an injury that it has to repair will increase your antibodies. If you have antibodies from having any viruses like EBV, CMV, cold sores (a type of herpes virus), this can keep your antibodies elevated, even if those viruses are not currently active. Remove all of those causes (if you can identify them) and you should experience a reduction of antibodies. However, that might require living in a bubble.

I keep very close track of my antibody levels and have tested them for many years as I've had all sorts of minor illnesses, UTI's, some minor injuries, some exposure to environmental toxins, etc. I've seen the results of my antibodies in response to these stresses on my body. Thru all of this, with exception of having to eat gluten a few months ago so I could get a biopsy, I've remained gluten, dairy and soy free the entire time. Eating that way did seem to improve my antibodies. It is all of the other things that made recently made my antibodies increase again recently into the many thousands above where yours currently is.

[SlowDragon Administrator]

Your FT3 is still very low.

If endo won't consider increase in Levothyroxine ask if you can trial addition of small dose of T3

Many with Hashimoto's find it necessary

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[Tristy]

Should I ask for increase in Levothyroxine before requesting a trial addition of small dose of T3?

[SlowDragon Administrator in reply to Tristy]

Up to you. Depends on your CCG policy on T3. Very many (incorrectly) have blanket ban on T3

Is your endo NHS or private?

If private, NHS won't fund anyway.

Look up info on CCG via Improve Thyroid Treatment campaign on Facebook. There's list of CCG's and loads of research links and letter templates.

Even if NHS, we have to fight hard to get it prescribed

But the more that persist and get it, the more it becomes recognised we need it

Might consider DIO2 gene test. If positive result it can help with your case.

thyroiduk.org.uk/tuk/testin...

See how you get on with endo first. There are still many Endo's won't consider prescribing T3 at all

Advice from BTA

british-thyroid-association...

[ShootingStars in reply to Tristy]

You're not converting well. Your FT4 is still too low at 16.1. It's not even half the range yet, which is 17. It should be at least 17, or slightly higher. Your FT3 is also still too low at 4.4. It's not even half range yet either, but should be closer to 3/4 range. It should be up near 5.875. Not converting can be caused by high antibodies. If your thyroid levels are too low, in absence of any illness, chronic stress, or other outside force driving high antibodies, the strain of too low thyroid hormones can help keep antibodies high, too. It can be a big circle.

[Tristy in reply to ShootingStars]

Hi ShootingStars, thanks for your reply, very interesting. My Endo has increased my levo to 162.5mcg for 6 weeks and then if needed up to 175mcg. I'll have to see how I get on with that and go from there.

[ShootingStars in reply to Tristy]

Hi Tristy. You're welcome. Adding more T4 will bring both levels up, but it won't fix the conversion problem or bring your T3 up where it should be and T3 will still be lagging behind. To get your T3 up where it should be by only adding T4, your T4 level would end up much too high, and then you'd have new symptoms. Something to watch for. Isn't your endo concerned about you not converting and your low T3? Will he/she add T3 if you ask? You'd be surprised at how much better even the starter dose of 5 mcg can make you feel.

Aside from being gluten free, are you also dairy, soy, nightshade, and goitrogenic foods free? Eliminating these foods can help keep inflammation (a major enemy for people with autoimmune problems) down and help reduce antibodies. Dairy, soy, and nightshades are all inflammatory foods. Goitrogenic foods can impair thyroid function, reduce thyroid hormones and cause goiters. Raw goitrogens are worse for you than cooked, having a diet full of them is not recommended if you have thyroid disease, and certain foods are higher in goitrogens than others. I'm not sure if you've mentioned this before, but do you have a goiter and has it been ultrasounded?

[Tristy in reply to ShootingStars]

Thanks ShootingStars, My Endo thinks my levels are fine, he doesn't think there's anything wrong with them as they are 'in range'. He agreed to increase the T4 due to symptoms. I asked him about T3 and he won't prescribe T3 as he doesn't think it does any better than T4. He has also said that no GP's in the area will prescribe it any more anyway so there was no point me pursuing that with him. He only has 3 patients who he prescribes T3 to and that's because they are allergic to T4. Along with being gluten free I am also soy and nightshade free but not dairy free. I have had 2 ultrasounds and both show 2 small nodules which haven't changed in size over a 6 month period.

[ShootingStars in reply to Tristy]

I'm sorry. Not that old mentality where it doesn't matter where you fall within the huge range! Why can't these doctors understand that this doesn't make logical sense? They can treat people with diabetes and get them into the optimal range, but they can't apply the same concept to thyroid disease. Exact same principals: too low, and you get more symptoms. Too high, and you get more symptoms. Get "in the zone" and you have the lease symptoms.

Your experience is similar to mine and is exactly why I do not see endos. I encountered that same lack of ability to understand the concept of the optimal part of the range where people experience the least symptoms, and that same oblivion to the importance of T3. So wait: He will prescribe T3, but only to a select few? Allergic to T4?? That doesn't make any sense. People have T4 in their bodies, regardless to if they are supplementing T4. So he's got 3 patients who's bodies attack the T4 in their bodies?? Even if they are only taking T3, they will still have T4 in their body. Most likely what he isn't understanding is that it's an allergic reaction to an additive in the T4, not T4 itself.

It doesn't matter if your nodules haven't changed in size. It's the type of nodules present that is what matters. What does your radiology report say about your nodules? I have 3 small nodules. They were biopsied. Certain types of nodules must be biopsied to rule out cancer.

I'd be surprised if no GP's prescribe T3, unless you are in a tiny town and this endo personally knows all 10 GP's, as well as their exact prescribing habits. Do you have any alternative doctors in your town or nearby towns? ND's, some chiropractors treat thyroid and other health conditions and some open minded nurses who practice the whole boy approach might be able to help you. Is there a compounding pharmacy in your area?

[Tristy]

Thanks SlowDragon. My Endo is private. I have a feeling he won't go for T3 but I will see how I get on. I thought the DIO2 gene test only showed positive if you weren't converting at all. Is that not the case?

[SlowDragon Administrator in reply to Tristy]

No, it has some affect, and tends not show low T3 in blood tests

I have heterozygous DIO2 variation, i.e. From one parent.

If from both parents (homozygous) obviously has even more effect.

[Tristy in reply to SlowDragon]

As always, thanks for all your help. It really does help on this journey. After having last summer off work sick I am so much better than I was thanks to advice. On to the next step now.