High antibodies but very good TSH . . Help me p... - Thyroid UK

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High antibodies but very good TSH . . Help me prep for my Dr appt!

Lolo1289
Lolo1289

I have been tired for 10 years. Could take a nap at any point in the day, yawning by 10am type tired. I’ve always lacked concentration and haven’t read a book in years because of this. I have permanently cold hands and feet, hair falls out in clumps, crap nails and skin etc etc. I have always thought it was my thyroid but have always been told it’s fine.

I have recently been feeling even worse, with my digestion becoming unsettled, my lack of concentration being so bad I don’t process what someone says directly to my face, my memory is utterly useless at this point and I was starting to feel pretty frustrated so I went to my GP.

I had some blood tests done recently and here are the results:

TSH - 1.17 (0.27-4.20)

Thyroid Peroxidase Antibodies - 146.6 (<34)

Folate - 3.63 (2.50-19.50)

Ferritin - 23 (15-150)

B12 - 617.5 (180-900)

Vitamin D - 73 (50-75 suboptimal, >75)

I have a few other vitamin/mineral results but this was essentially all that was tested thyroid-wise.

In the last few days I’ve been feeling ‘better’ - my tiredness, inability to concentrate, brain fog and crap memory have returned to their usual state - not great but not as bad as a few weeks ago. I was getting either a racing heart or faint feeling (not sure which!?) when standing or moving quickly which seems to have subsided and my difficulty getting to sleep seems to be getting better to. I’m still getting hot flushes occasionally but with the weather having been so warm recently I’m not sure this is related. I still feel rubbish, but this sudden worsening of symptoms seems to be fading.

I have an appt on Friday and I expect to be told I have autoimmune thyroiditis but that as my TSH is ‘very good’, there’s nothing that can be done and I’m fine.

I wonder whether it’s possible we’re testing at the wrong time though? Is it possible I am normally hypo (even if just ‘subclinical’), but that during a hyper swing I feel worse, so get tests and they seem fine because this swing has dropped my TSH? There was a month between starting to feel rubbish and actually having the tests so my TSH could have been on the way back up? If I was to have tests again in say a month, might it show I’m hypo?

I guess I don’t want to get fobbed off and want to know what to say/ask. I’ve felt rubbish for at least 10 years now and if it’s possible this is what’s causing my symptoms I’m not willing to be told I’m ‘fine’.

Any help appreciated!

23 Replies
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SeasideSusie
SeasideSusieAdministrator

Lolo1289

You have a big problem here

Ferritin - 23 (15-150)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

With yours that low I would ask for a full blood count and an iron panel to see if you have iron deficiency anaemia.

B12 - 617.5 (180-900)

Folate - 3.63 (2.50-19.50)

Although B12 is sufficient, folate is extremely low. Maybe not low enough for folic acid to be prescribed, you can always ask your GP, if you can't get it prescribed then buy a good quality B Complex containing 400mcg methylfolate, eg Thorne Basic B (which raised my bottom of range folate to top of range in 2.5 months by taking 1 capsule daily) or Igennus Super B which you would need to take 2 tablets.

Vitamin D - 73 (50-75 suboptimal, >75)

As you can see this is suboptimal but you wont get anything prescribed for this level. The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L. You could buy some D3 and supplement yourself. As you have Hashi's then an oral spray is best for absorption. BetterYou do a 3000iu dose spray and if that was my result I would take 6000iu daily for 4 weeks then reduce to 3000iu daily then retest 3 months after starting.

When you have reached the recommended dose then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

BetterYou do a D3/K2 combined spray which you may wish to consider.

As for the Hashi's, most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

To try and persuade your GP to start you on Levo, you could use the article in Pulse magazine (the magazine for doctors) by Dr Toft, leading endocrinologist and past president of the British Thyroid Association, which says that if antibodies present then patients should be prescribed levothyroxine to nip things in the bud. Email Dionne at ThyroidUk

tukadmin@thyroiduk.org

and ask for a copy which you can then show to your doctor. I believe it is Question 2 which deals with this.

Thank you for your reply! I thought the fact my GP bothered to test antibodies was a good sign but they’ve declared my ferritin and folate as fine which they’re obviously not.

I did feel like she listened at my last appointment, so if I go in armed with some info maybe she can be swayed to do something . . .

SlowDragon
SlowDragonAdministrator
in reply to Lolo1289

Come back and update us after your appointment.

If she won't prescribe vitamin supplements you will have to self supplement vitamin D and folate (with vitamin B complex)

Insist on full iron panel to test for Anaemia as ferritin is very low

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps 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 and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Lolo1289
Lolo1289
in reply to SlowDragon

Thanks for these links - I’ll get reading and hopefully if I go in armed with information she’ll be persuaded to help!

SeasideSusie
SeasideSusieAdministrator
in reply to Lolo1289

Lolo1289

Here is an article about low ferritin

restartmed.com/low-ferritin/

Possibly not one your GP will accept though but at least it will be useful for you.

You could ask her that with a range of 15-150, if your level was 14 you would be declared out of range and hopefully get some treatment, but at 15 you wouldn't. And how you would feel with a level of 15 would be vastly different from how you would feel if your level was 150.

Similarly, with your folate level, when the range is that wide, I can't see how it can be acceptable to be only about 1% through the range, but they are trained to only see that it's within the range whether it is very low or high.

What you say makes perfect sense, but it baffles me that someone with all the education and experience my GP has doesn’t automatically see that it might help to not just be ‘in-range’.

Thanks for all your links - I shall get reading!

Yes your high thyroid autoimmune antibodies (TPO) show you have Hashimoto's disease or autoimmune thyroiditis, and your doctor might well tell you nothing can be done for you until your TSH reaches 10. Many doctors don't understand the significance of the TPO result ( both my Gp and endocrinologist ignored mine!) - that these antibodies periodically attack the healthy thyroid gland mistakenly believing it to be 'alien', and dead cells along with their hormones are dumped into the blood stream. Thus, at times, you have raised FT4/FT3 levels and low TSH in what are known as 'flares', then comparative troughs when TSH will rise. So one week/ month you appear hyperthyroid, the next hypothyroid. Perhaps that is why you felt so bad last week. Over time more and more of the thyoid gland is destroyed and you are permanently hypothyroid. You can try to limit the antibodies action by trying a gluten free, even dairy free diet. Without a full thyroid test of FT4 and FT3, Total thyroxin it is impossible to tell what is really happening, once diagnosed as hypothyroid a Gp rarely tests beyond TSH. Unfortunately Hashimoto's is characterised by poor gut absorption meaning nutrients from food, drink and even supplements are frequently low. You would find you feel better , and your thyroid health and T4 conversion, improve if your Vit D, B12, folate and ferritin levels were at optimum: Vit D should be 100-150 nmol/l; B12 near top of the range; folate and ferritin at least halfway thru their ranges, but ferritin is better for menstruating women at 100-130 ug/l. It is very unlikely your doctor will provide supplements, and you might have to buy your own. Look up SeasideSusie's previous replies to posts about recommended supplements - doses, brands etc. Good luck with doctor..perhaps if you can convince him/ her of your need they might provide a 50 mcg trial dose.

Thank you - I’m happy to get supplements myself and even get private blood tests in a few months time if I hit a brick wall - I will try and persuade my GP first but I won’t hold my breath!

Your info on optimal levels is very helpful - thank you!

You could very well be right about the Hashi's 'flare'. But, the problem is, there's no way of knowing when you're going to have one. They are totally unpredictable, as far as I know. And, you would also need your FT4/FT3 tested to back up the theory, because they rise and fall much faster than the TSH. Given how difficult it is to get even the TSH tested, I doubt your GP would agree to your plan - logical though it is. :)

Lolo1289
Lolo1289
in reply to greygoose

Yes - I realise I’m unlikely to get anywhere but at this point am feeling slightly buoyed by finding out my antibodies are high because even if the GP dismisses this I now know there are things I can do myself.

Would it be worth me getting a full thyroid test done privately in say a month to test my theory? Knowing when a flare will hit is difficult but if we were to assume that how I felt over the last few weeks is a flare, then I can just test when I feel ‘normal’, which I’m sure is actually hypo. Obviously comparatively speaking I’d only have TSH to go on but if it came back as hypo in itself, it’d prove I am hypo (and that the lower TSH was likely due to a flare) and I’d not be left wondering?

SlowDragon
SlowDragonAdministrator
in reply to Lolo1289

Getting vitamins optimal is first step

Then perhaps trying strictly gluten free diet next.

Then get full private testing of thyroid and vitamin levels in say 2-3 months

greygoose
greygoose
in reply to Lolo1289

Well, presumably, if you did your own labs, you'd do FT4 and FT3, as well. So, that would show what's going on - if you catch them at the right time.

But, I'm surprised you think that 'normal' is hypo. It's usually the hypo - low T3 - that causes symptoms. If the FT3 rises, people either feel better, or don't feel any different at all. Something I've noticed on here is that you can't use symptom to tell when you're having/have had a 'flare'.

Lolo1289
Lolo1289
in reply to greygoose

By normal I mean rubbish - I’ve been tired with a lack of concentration for years along with various other symptoms like hair loss, dry skin, cold hands and feet . . .

But a recent worsening of these symptoms along with a few other new symptoms made me think it might be a flare. Especially now they’ve subsided and I’m feeling more like I normally do. Maybe it’s not that and it’s some other reason - maybe me feeling rubbish is for some other reason altogether. But if I don’t investigate this now to find out if it is the Hashi’s/possible hypo that’s causing this I’ll just keep wondering.

greygoose
greygoose
in reply to Lolo1289

That's very true. You need to at least try and find out.

I’m in exactly the same position as you - euthyroid Hashimotos - and I feel awful most of the time. My free T3 when last tested was 3.8 in a range of 3.5 - 6.5 and because my TSH is normal the doctors said I’m fine. It’s very hard and I’d love to hear if you get a positive outcome from your GP.

Lolo1289
Lolo1289
in reply to Paolatello

So frustrating isn’t it!? “Oh, you’re fine, your levels are great!” . . . Um well, yes, if you consider constant yawning and fighting to stay awake, a total inability to remember anything and the concentration span of a goldfish ‘fine’ . . .

I will let you know what happens with the GP.

So it looks like they havent measured ft3 and ft4

It would be prudent to do this

You cant assume your ft4 will be in the normal range just because your tsh is

It is called the tsh reflex.

However high antibodies most likely indicate an

Autoimmune process meaning

Your thyroid is causing you havoc

I would look at the possibility of

Hashimotos of Graves disease

If your thyroid is normal

I would check your pituitary

But it is most likely your thyroid

Lolo1289
Lolo1289
in reply to Courtlea

Yeh, when she said she’d run a thyroid panel I thought that would at least include T4 but apparently not.

I’ll see how my next appointment goes and then maybe I’m just better off testing privately.

Courtlea
Courtlea
in reply to Lolo1289

It doesnt test - thyroid panel- if your tsh is within range

As expected, there is nothing more the NHS can do, other than another blood test in 6 months time (which won't include anything of use anyway). She was very careful not to outright diagnose me with autoimmune thyroiditis but didn't deny it when I mentioned it. As far as the NHS is concerned I just have to wait until my thyroid packs in altogether before they'll do anything.

She did say she'll give me a referral to any private endocrinologist of my choosing, or I can get blood tests done privately and that many people see naturopath for help with symptoms. Basically, do anything that doesn't involve the NHS because we won't help you.

She did at least concede my iron could be topped up a little and that I can do this with over the counter stuff.

Anyways, thanks for all your replies and links, they've been very useful!

Have you done the ThyroidUK check list of symptoms? I took this to my GP and started a 4 year journey to finding a consultant endocrinologist that admitted I did have the signs of hypothyroidism and started me on a trial of thyroxine. I had to fight all the way, don’t give up and write things down to take into the surgery as my memory was useless. The key for me seemed to be the evidence (private blood tests) of both sets of thyroid anti-bodies out of range with normal TSH, T3, T4 results. I am not back to ‘normal’ yet, but those who know me have noticed the positive change. I am still in the fight until I am given a dose of thyroxine that I feel is right for me.

Lolo1289
Lolo1289
in reply to MTKW17

Yes - I took the checklist with me, along with several articles suggesting treatment when antibodies are present is a good idea but she basically shut me down straight away, suggested many of the symptoms were something else, and told me if I wanted to persue a diagnosis of CFS she’d refer me to the clinic. I decided to leave at that point so I didn’t have to be dragged out by security after telling her how utterly useless she was.

I’m currently taking supplements to make sure my folate/ferritin/selenium/vitD etc are all optimal, and then I’m going to get a private test to include all thyroid and relevant vitamin tests in a couple of months so I have a start point. Depending on what that says I’ll either go see a private Endo or if I don’t think I’ll get anywhere just wait for my next NHS blood test in January. I’ll probably also do another private test so I can have a full set of thyroid tests at roughly the same time as the NHS test because they will barely test for anything anyway.

I’ve no doubt it’ll be a long process but I’m not ‘wasting’ my 30s feeling crap like I have in my 20s.

I’m glad you’re on your way to hopefully sorting it out - gives me hope that with a bit of perseverance I can too!

Make sure a private test does TSH, T3, T4 and reverse T3, plus the TPOAb and TgAb. All the information I have read online says that if you have both antibodies you either have or are well on the way to having autoimmune thyroiditis, i.e. Hashimotos hypothyroidism.

I did see a private gp several times and he was very helpful for me as what he said right at the beginning, the NHS have come round to saying 4 years later. I have seen 5 endocrinologists and 1 rheumatologist in that time. I thought I was making the symptoms up as I kept hearing the NHS mantra, ‘... your results are in range so you are normal.’

I also had parathyroid results way out of whack at one stage and I am constantly on a prescribed dose of VitD.

I also had my cardiologist testing my thyroid as he thought the palpitations and random high blood pressure I get may be caused by thyroid issues.

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