Do I have Hashimoto's?: I am taking thyroid meds... - Thyroid UK

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Do I have Hashimoto's?

raglansleeve profile image
16 Replies

I am taking thyroid meds (Synthroid and Cytomel), but do not know what has caused my hypothyroid state. I had antibodies tests and my results are:

Thyroglobulin Antibody <10 (< 40kIU/L)

Thyroperoxidase Antibody 14 (< 35 kIU/L)

These numbers look "normal", but I've heard that people have flares, so that if your blood isn't tested during one of the flares, your numbers won't be high. So how do you determine if you have Hashi's or not?

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raglansleeve
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16 Replies
greygoose profile image
greygoose

What happens is, briefly, the immune system attacks the thyroid, and the dying cells dump thier stock of hormone into the blood, causing levels of FT4 and FT3 to suddenly go sky high, and therefore the TSH to drop. As that is happening, a little Thyroid Peroxidase and a little Thyroglobuline - proteins contained in the cells of the thyroid, necessary for producing thyroid hormone - also leak into the blood, where it shouldn't be. So, the TPO and Tg antibodies come rushing along to clean it up.

So, if you had a blood test at that point, the TSH would probably be suppressed and the FT4 and FT3 would be high, and your doctor would freak out that you'e 'gone hyper' or accuse you of 'abusing' your thyroid hormone. Doubtful he would even test the antibodies a second time, but if he did, they would be over-range at that point. And things would stay that way for quite a while, They don't go back to 'normal' instantly, so you would have a good chance of catching the abnormal results during the aftermath of the attack - or Hashi's 'hyper' swing, as it is sometimes known.

That said, antibodies fluctuate all the time, Less dramatically when there isn't an attack going on, but they do fluctuate.

What's more 20% of Hashi's people never even have over-range antibodies, but it could be picked up on by a knowledgeable person on seeing that the Frees suddenly go very high without a change of dose (that does not include the majority of doctors!). Or, if you suspect you have Hashi's for some other reason, an ultra-sound of the thyroid would show if any Hashi's damage had been done to it. So, there are ways of knowing.

But, whether you have Hashi's or not, the treatment is the same because there is no treatment for the Hashi's itself, just replacement of the missing hormones as the thyroid becomes too damaged to work properly. :)

raglansleeve profile image
raglansleeve in reply to greygoose

When I asked my endo if I had Hashi's, he told me that all people with hypothyroidism do. He said that Hashi's is just another word for hypothyroidism. I know that isn't true, so since he won't diagnose me properly, I was hoping that I could find a way to do so myself. I guess that I can't though, since I would have to be having my blood done at roughly the same time as an attack for the antibodies to be high? I had a thyroid ultrasound last year (shortly after my referral to an endo) and it came back as normal - no nodules, everything regular in shape, etc.

greygoose profile image
greygoose in reply to raglansleeve

Silly man! lol My goodness, the do come out with some rubbish at times!

How long since you were diagnosed? And, do you know what your blood test results were on diagnosis? It could be that at the time of your ultrasound, there wasn't enough damage to be noticable. And, you don't have to have nodules to have Hashi's. However, it is sounding more and more like you don't have it. So, the chances of you ever finding out what caused your hypo are pretty low. Does it really matter?

raglansleeve profile image
raglansleeve in reply to greygoose

The first image shows the numbers when I was diagnosed, before I started on Synthroid. I was on Synthroid only for the first couple of years (2017 - 2019), and then after educating myself, I requested the Cytomel (unbelievably, I lucked into an endo who agreed with using it!). I went up from 25 to 50 to 75 Synthroid and from an original dose of 5 mcg's of Cytomel up to 10. I guess that it doesn't matter if I have the diagnosis or not, since treatment is the same. I am still titrating, but almost all of my original symptoms are now gone, so this might be my final dose. I have also overcome many issues that I had no idea were even related to hypothyroidism (acid reflux, sore muscles, restless legs, and sore ear cartilage(!)).

greygoose profile image
greygoose in reply to raglansleeve

OK, so your TSH wasn't very high, so even if you did have Hashi's,t here wasn't an awful lot of damage done, so might not have shown up in an ultersound.

That said, your Free T4 was pretty low, and that wasn't reflected in the level of your TSH. So, there's a possibility that your hypothyroidism stems from your pituitary or your hypothalamus (Central Hypo), rather than the thyroid itself, and that's why the thyroid looked good in the ultrasound. But, even if it is CH, the treatment is still the same. :)

Have you ever had your cortisol tested, or any other hormones?

raglansleeve profile image
raglansleeve in reply to greygoose

Not yet, but it's on my to-do list.

SlowDragon profile image
SlowDragonAdministrator

Have you had ultrasound scan of thyroid, if not, request one

raglansleeve profile image
raglansleeve in reply to SlowDragon

Yes, and it was normal.

SlowDragon profile image
SlowDragonAdministrator in reply to raglansleeve

So what were TSH, Ft4 and Ft3 when diagnosed

How much levothyroxine are you currently taking

What are your most recent thyroid results

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

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

raglansleeve profile image
raglansleeve in reply to SlowDragon

First image is when I was diagnosed as subclinical by my GP. Second image is my latest results. The last bloodwork was done while I was on 50 mcg's of Synthroid and 10 mcg's of Cytomel. I take my Synthroid and 5 mcg's of Cytomel in the morning, and the other 5 mcg's of Cytomel late in the day. I left 14 hours between last Cytomel and bloodwork, and did not take my morning meds until I returned home. And based on those last numbers, I convinced my endo (who was reluctant) to up my Synthroid to 75.

Diagnosis
raglansleeve profile image
raglansleeve in reply to raglansleeve

Couldn't add second image, so here it is.

Most recent.
SlowDragon profile image
SlowDragonAdministrator

How much do you weigh in kilo

Guidelines on dose levothyroxine by weight when on JUST levothyroxine ONLY is 1.6mcg levothyroxine per kilo

standard starter dose of 50mcg

Dose levothyroxine is typically increased slowly upwards in 25mcg steps (retesting 6-8 weeks after each dose increase) until near full replacement dose, before considering adding T3

If Ft3 remains low once on or near full replacement dose, then typically dose levothyroxine is reduced by 25mcg and 2 x 5mcg T3 added

Taking almost any dose of T3 will result in very low TSH when adequately treated

It can be hard to persuade endo to increase levothyroxine dose in face of low TSH

If Ft4 remains low, or especially if drops further you may need to increase levothyroxine at next test

You need vitamin D, folate, ferritin and B12 tested

Important all four are optimal

Plus testing cholesterol too

raglansleeve profile image
raglansleeve in reply to SlowDragon

I weigh about 85 kilos. Most of my symptoms have diminished or disappeared completely with my last dose increase, so I'm not sure if I need much more (maybe a bump up to 100?) I had a B12 deficiency when originally diagnosed (the symptom that sent me to my GP in the first place was full-body neuropathy, and he then tested my thyroid and B12) and my endo later tested for vitamin D which was low too. I've been supplementing with B12 since the beginning (2017) and am now consistently over range. I only found out about the vitamin D deficiency about 6 months ago though, and haven't had another test done on that. I may have to go private for that though, because it's like pulling teeth to even get the endo to increase anything. The last thing I want to do when I finally get him to agree to a bump, is then ask him to put vitamins on the recquistion too. I live in Canada and our bread has been infused with folic acid for decades now, and low folate is almost never encountered here at all. I don't have any low iron symptoms, but have been meaning to see if I could get those tests done anyway, but would have to go private for that too, I think. Cholesterol is good.

Bellaowl profile image
Bellaowl

I had an ultrasound. Then many yrs later a CT scan which showed there was no thyroid left- total absence. This 1 of the NICE criteria for prescription of Liothyronine.

So CT scans are most useful.

Bella.

raglansleeve profile image
raglansleeve in reply to Bellaowl

How awful for you! I'm already on liothyronine, so hopefully that won't happen to me too.

Bellaowl profile image
Bellaowl in reply to raglansleeve

Thanks for the empathy. Have been on Lio since 1986-nice Italian Jewish doctor as eccentric as they come, since died.

I have polycystic ovary syndrome so heart and diabetes also affected. I gather there is relationship between insulin and T4 - ? Inverse.

In many ways it’s been easier since the thyroid destroyed itself 2004.

The CT indicated there was never any thyroid tissue on one side, or perhaps it was destroyed in my teens. I was a very small surviving prem twin.

I agree there is a difference between the different makes of Lio- some definitely seem better than others. I’ll have to make closer notes.

I wonder if the same happens with Metformin because sometimes it seems totally ineffective. The sitagliptin is more consistent/reliable.

Just come through major flooding on A40- the drain covers are lifting off or like fountains.

Bella.

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