Thyroid

[Sicabre]

Hi,

I'm from Netherlands but due the extreme high amount of feedback on this community I think it would be good to share my story here to see if there any good tips from you folks.

2011

Hyperthyroidism after high hart reate. All the stuff which comes with it.

Analysis by endo and diagnosed with viral thyreoditis. He said you will become hypo and stabilize. High anti tpo in thousands (7000) where normal us I believe under 300.

Ali anti tg bodies noticed. No anti against tsi so no Graves.

Scintigrafy shows no absorption of jodium so all good I suppose.

After 5 months it indeed stabilizes and.i move on. No need for treatment.

2013 boom same as 2011. Hyper but no hypo in this case. Same analysis. Still high anti bodies but same picture on Scintigrafy shows recidive viral. Im starting to think more is going on

2016 boom again hyper and the small.hypo to stabilizes

I got to some private clinics and speak with two professors. One does an echo and kinda goes. "Your echo is great. It doesn't show any devotion and lots pretty healthy. That's why you are constantly recovering. He's not damaged enough but I believe based on anti bodies hashimoto. Fully blood analysis show same picture. Calconite and sedimentation all good. Tg and anti tpo still there. Lowered a bit but still high.

Other professor says, well you are complicated as it could become graves but hashimoto looks more reasonable

Now 2018 I get this weird symptoms which I had in 2011 and 2013

1. Muscle aches

2. Tired

3. Stomach issues

4. Nerve pain

5. Light headache in morning

6. Sinus

7. Cold warm sensation legs

Tsh 1.5

Ft4 17

Gp goes like it's not your thyroid..I'm like whatever.

Vitamine d 49 with reference 50

B6 little to high

Antibodies still there and high.

Since 2011 I never felt good but not sure how to fight this.

Male 37

[mistydog]

You really need to get your Free T4 and Free T3 tested although your Vit D is low so that won't help. Have you had folate, ferritin and B12 tested? They are crucial to the conversion of T4 to T3, whether you are on medication, or producing your own hormone. As you have antibodies, it probably suggests Hashimoto's, and you may find going gluten free is helpful.

If your doctor won't test the above, then get them tested privately and post the results with ranges here for people to comment.

The test should be first thing in the morning, and fasting with no caffiene, only water.

[Hidden]

I'd go with Hashimoto's as well - with that your antibodies can go up and down and you'll have attacks on your thyroid gland which can make you appear hyper. In fact it's just a 'Hashi flare' when antibodies attack and a lot of hormone is released, causing apparent 'hyper' symptoms. In time this settles, and your thyroid's capacity to produce hormone is reduced further.

As mistydog says, you really need to get T3 tested. Even though your TSH is 'in normal range' it's pointless to try to diagnose Hashi's from a single measurement. Due to the Hashi flares it'll go up and down frequently. Doctors rely far too much on this single value. That vitamin D looks on the low side, also you need to have optimal ferritin, folate and B 12, so those need testing as well.

Gluten free (and maybe dairy free as well) may help lower antibodies (they do for some people, so worth a try). Selenium (200 mcg daily) can also help lower antibodies. I'd definitely get tested for those values you don't know as yet, that will help you decipher where the problem may lie.

[Sicabre in reply to Hidden]

Selenium I use. Last but b12 was 330. Ft3 was 5 and ft4 16. I actually didn’t test ferritine for a while. January I believe. It was good then. I got anti tg and anti tpo quite high. My endo said it’s quite high. Just to understand can I have symptoms even if I’m within clinical ok ranges ????

[Hidden in reply to Sicabre]

Yes you can have symptoms. I am clinically 'normal' now but I still have symptoms, which is why I decided to try NDT instead of T4. If those results have the usual ranges then your FT3 is good. However that's not the full story, your body may not utilise thyroid hormone efficiently if you are low in ferritin, folate, B 12 or Vitamin D. Do you know what your Vit D level is? Your B12 looks to be on the low side, but I'd need to see the range (the numbers in brackets after the result). Do you have those?

[Sicabre in reply to Hidden]

Yeah

B12 range

150-700 mine was 300

Vitamins d normals between 50 en 175

I got 49

You need ft3 and ft4 also?

[Sicabre in reply to Sicabre]

Ft3

2.8 till 7.10

I got 5

Ft4

12-22

16

What is ndt? And to understand what are your symptoms? My anti tpo was always around 8000

They measured it once but later only like. Higher 1300. For the endo it was like. It’s higer than expected.

[Hidden in reply to Sicabre]

Your B12 is low, yes. It needs to be up near the top of the range. You should supplement with sub-lingual B12 'lozenges', I used 5000 mcg methylcobalamin pills to get my B12 up. Your Vit D is far too low, should be nearer to 100. Again, try supplementing with Vitamin D3 tablets, I'd suggest 5000 i.u. tablets daily to start and remeasure your D after a couple of months. Also if you can, get out in the sun so your body will make some naturally.

FT3 as I said is at a good level, so conversion isn't a problem (T4 is converted by our bodies to T3 unless we have defective genes. Yours appear OK.

NDT is Natural Dessicated Thyroid, it's what used to be used for all hypo patients before Levo was invented. It's natural, comes from pig thyroid, and also contains a smidge of T3 along with T4. However with your results I'd suggest it's your vitamin deficiencies that are letting you down and preventing your T3 being utilised fully.

Your antibodies are very high! Normal range for TPO (Medichecks range) is below 34! My TPO is consistently around 420. So you can see how high yours are. Are you gluten free? That may be the missing link you need to reduce those antibodies. You'd need to exclude gluten-containing products completely from your diet.

My own symptoms are always feeling cold, fatigue (although has improved somewhat of late), hair falling out, brittle nails, hair loss on body, dry skin, dry eyes, puffy face.

[Hidden in reply to Sicabre]

Are you on any thyroid replacement hormone? (Levothyroxine). If so, how much?

[Sicabre in reply to Hidden]

No levo.

I use b12 spray for mouth. My active b12 seems ok.

[Hidden in reply to Sicabre]

Ahh OK if it's active B12.

[Sicabre in reply to Hidden]

Past time I tested it it was 120 and this. Is upper limit. So my gp said no need for b12. Continue with supplements. How is you muscle soreness. No issues with it? And fatigue?

[Hidden in reply to Sicabre]

Luckily I've never suffered from muscle or joint pain. However my muscles are extremely weak. If I kneel down I can't get up without pushing myself up by a nearby object! Fatigue used to be crippling but has improved now, but then my FT3 was always low, now I'm on NDT I'm getting some in the pills.

[Sicabre in reply to Hidden]

Ah lucky you. Problem here in Netherlands is very conservative approach. It’s like values are ok! You had three flares which is unusual but your are ok! Spoke with 4 endos and all say different. It’s annoying. And all this vit imbalance. Even this high b6 which can cause neuropathy

[Hidden in reply to Sicabre]

It's really no better in the UK - they think Levo solves everything and you have to be pretty much dead on your feet to get a diagnosis!

[Sicabre in reply to Hidden]

It’s like I ask them what’s this. They just ignore. Or avoid the q.

I hear a lot about Ldn. Is this what some folks use here?

[Sicabre in reply to Sicabre]

How much was your ft3

[Hidden in reply to Sicabre]

LDN = Low Dose Naltrexone (think I spelt that right!). Some folk take it to help with antibodies, I haven't tried that one (yet!).

My latest FT3 was a lot better, 5.12 (3.10 - 6.80).

[Sicabre in reply to Hidden]

Is this ft3 so important. I mean. That's how you feel?

[Hidden in reply to Sicabre]

Yes it is, is shows how much active thyroid hormone is present in your blood at the time of the test. FT3 has a very short half life, around 8 hours, and so rises and falls quickly. If it's consistently low then you won't have enough for your body's basic processes. The thyroid uk website has a lot of info, you should have a look:

thyroiduk.org/tuk/about_the...

Doctors (in the UK, I don't know about the Netherlands) don't place much importance on measuring FT3, they rely solely on TSH - thyroid stimulating hormone, which is produced by the pituitary gland. They think once TSH is 'in range' then you are sufficiently medicated and any remaining symptoms aren't caused by the thyroid (at which point they may ask if you're depressed and wave anti-depressants at you!). It's terrible how they know so little about the thyroid and treat by numbers only.

[Sicabre in reply to Hidden]

Actually same here. They proposed some antidepressant for my symptoms. I was like "whats my Diagnose" my gp said "well don't know". So I said what about my endos who suspect hashimoto but then my tsh must be low.

One of the endos said. 100% hashimoto (the professor). The other professor countered said, yes I believe so but your thyroid looks healthy OK on echo so that's why you are recovering. It's complex in your situation. 3 recidives of viral is not that common so could be hashimoto....

All this useless blabla. They said at some point he will fail but when we don't know so no medicine.

But I feel crappie. Gp is not educated for this stuff. So this t3 is just a marker for 8 hours..