New to the group: Hi-Unfortunately I've had to... - Thyroid UK

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AliceUzbekistan profile image
9 Replies

Hi-Unfortunately I've had to join this group as I just received a blood test result that shows high thyroid antibodies: AT-TG

830.6 IU/ml , AT-TPO208.5 .

My T4 is a little on the low side but T3 OK

(FT4

11.2 pmol/l , FT3

6.50 pmol/l )

I'm 44, with two kids (one of whom has Type 1 diabetes). My Mum has Hashimotos (she finds this group incredibly helpful). I am really keen to avoid all the problems she has had and if possible to protect my thyroid from further damage. I know there are various supplements (zinc and selenium) but has anyone tried using thyroxin as a prophylaxis to prevent full blown Hashimotos? There seems to be some literature about it. My mum doesn't tolerate T4 well (she's on T3) and I don't know whether I would share that trait. I live in Uzbekistan so my access to consultants here is limited but if anyone can recommend someone in the UK who might support me on a trip back to the UK or by email to try to protect my thyroid function (rather than just waiting until it packs up) I would be very grateful for a recommendation! Thank you!

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AliceUzbekistan
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9 Replies
greygoose profile image
greygoose

Hi AliceUzbeckistan, welcome to the forum.

I'm sorry but we really need the ranges for those results. Your FT3 actually looks high, but difficult to say without a range. Do you have a TSH result?

The thing about taking thyroxin is that it converts to T3. If your T3 is already high, then it's going to go over-range, and that's not a good thing. That will be bad for your heart.

In any case, with hormones you always need to start low and build up slowly. You can't suddenly start taking massive doses.

What you could do, though, is follow a 100% gluten-free diet to bring the antibodies down.

AliceUzbekistan profile image
AliceUzbekistan in reply togreygoose

Hi, sorry I am new to all this. Is this what you need?

Result

RR

Ferritin

24.0 ng/ml

N (6.24-137)

TSH

1.85 mlU/l

N (0.46-4.7)

FT4

11.2 pmol/l

N (10.0-28.2)

FT3

6.50 pmol/l

N (4.3-8.1)

AT-TG

830.6 IU/ml

<125

AT-TPO208.5 Me/mlMan: 0-30

Women: 0-30

Women older 50 years old: 0-50

greygoose profile image
greygoose in reply toAliceUzbekistan

Ok, so for a start, your ferritin is far too low. Before even trying to take levo, you need to raise that. It should be at least mid-range.

You also need to get your vit B12, folate and vit D tested. They are very important for your body to be able to use thyroid hormones.

Your TSH is only slightly high, at the moment, and all doctors would consider that normal, but, as you have Hashi's, it would be better if it were suppressed.

The ranges for the FT4 and FT3 are far wider than in the UK, which only goes to show that it is absolutely imperative to give the ranges!

Your FT4 is very low, and your FT3 is just over mid-range. The good news is, that you seem to be converting well! However, that won't last long if you don't get some more T4 into you.

So, your instinct was right! It would be a very good idea for you to start taking levo now. Start low, as I said, 50 mcg a day for six weeks, then - if you can - get retested. You'll probably need to increase your dose by 25 mcg. So, take the 75 mcg for six weeks and retest. If you can manage it, you need your TSH to come down to 0.01, without your FT3 going over-range. See how it goes. You might need another dose increase, you might not. Time will tell.

In any case, there will always be someone here to help if needed.

As to your question about an endo in the UK, the answer is no. Endos in the UK seem to be getting worse and worse; less and less knowledgeable and more and more into patient blaming. At this stage of the game, you'll probably be far better off on your own! :)

AliceUzbekistan profile image
AliceUzbekistan in reply togreygoose

Hi Greygoose,You gave me such helpful advice-I wonder if you could look at my latest results and give me your view?

I took 25mg for the first 8 weeks after I got diagnosed with antibodies, then put it up to 50mg when this had virtually no affect. This feels OK but occasionally just before my period I get thumping heart and a tight chest so I don't want to take more thyroxin necessarily. I have also been taking 60mg of iron every day (plus a multivitamin, extra B12 (i'm vegetarian) and Vit D.

My latest blood work gave me these results:

TSH (III-generation)

1.17 mlU/L 1.63 N (0.46-4.7) (was 1.63mlU/L)

FT4

12.4 pmol/l 12.3 N (10.0-28.2) (was 12.3pmol)

FT3

5.22 pmol/l 5.88 N (4.3-8.1) (was 5.88pmol)

AT-TG 41.0 IU/ml N (0-95.0) (was 830.6)

AT-TPO 394.0 Me/ml Man: 0-30 Women: 0-30 (was 208.5)

Women older 50 years old: 0-50

Ferritin 25.9 ng/ml 26.6 N (10-150) (was 24ng/ml)

Total Vitamin D-25 OH 28.1 ng/ml 42.9

Deficit: < 10

Insufficiency: 10 - <30

Normal condition: 30-100

Potential toxicity: > 100

As I understand it my antibodies are up and my T4 and T3 are not much changed since last October despite prophylactic treatment.

My Mum carries the gene which make her unable to process T4 and she's on T3 and much better for it. I am supposedly Euthyroid, but have difficulty managing my energy (but I am very low iron) and have had very dry skin and headaches, tendency to cystitis, bad PMT/period pain. Should I get the genetic test to see if I would be better on T3 do you think? Should I increase the thyroxin dose? I have a very understanding doctor but he is leaving in the summer and I'm not sure who I'll get next, so I want to get a clear sense of my needs and trajectory before then.

Thanks so much for any thoughts,

Alice

greygoose profile image
greygoose in reply toAliceUzbekistan

You most definitely need and increase in dose. Your FT4 is scraping the ground! But, you seem to be converting ok, because your FT3 is just under mid-range - too low, but shows you're converting. So, not much point in getting the test, and taking T3 probably wouldn't do any more for you than levo. But, you desperately need an increase in levo. The thumping heart, etc. is probably because you are so under-medicated. Plus, you have Hashi's, so things are going to get worse, rather than better, more hypo.

Your nutrients are still dire, and you really do need to bring those up. Ferritin should be up around 100; same for your vit D. There is absolutely no point in taking a multi-vit. At best they are useless, at worst, down-right dangerous, because they contain things you don't need - like iodine. If your multi-vit contains iodine, then it is probably making you worse.

What exactly do you mean by 'prophylactic treatment'? What treatment have you been taking?

AliceUzbekistan profile image
AliceUzbekistan in reply togreygoose

I just meant I was taking Thyroxin as a prophylactic to try to prevent future symptoms even though I am not yet fully symptomatic. Thanks for your thoughts-that's really helpful. I will discuss with my doc (and start taking some serious iron supplements.) My multivit doesn't have iodine in, but clearly isn't giving me what I need.

greygoose profile image
greygoose in reply toAliceUzbekistan

That's not the way thyroxine is supposed to be used. You need to take enough of it to make and keep you well.

Multivits never contain enough of anything to treat true deficiencies.

AliceUzbekistan profile image
AliceUzbekistan

Thank you so much. I really appreciate the support.

AliceUzbekistan profile image
AliceUzbekistan

My American doctor here in Uzbekistan is happy to start me on Thyroxin now and will oversee the doses. Phew!

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