Causes of unstable thyroid levels/symptoms

[Saggyuk]

Hey guys

Just thought I'd post my blood tests 2014 to show how unstable they were and the lack of correlation between symptoms/tsh and t3 levels for any further thoughts as to why. It has recently become clear this started around the time I stopped producing recorded levels of T4 and adding some back in has helped half the symptoms but have a feeling this is only half the story so just want to double check everything before messing about with doses.

The ten years prior to this had always been stable including throughout pregnancy on 50-60 mcg T3 with TSH 0.3-1, T4 around 4-5 and T3 around 6-7. 40mcg T3 since giving up gluten in early 2013 with stable results up until:

March 2014 - 40mcg T3 - Hypo

TSH 36.89 T4 <3.2 T3 5.8 (3.30-5.30)

September 2014 - 40mcg T3 - hyper

TSH 2.95 T4 <3.2 T3 6.8 (3.3-5.3)

February 2016 - 30mcg T3 - Hypo

TSH 16.85 T4 <3.2 (no T3 level)

Jun 2016 - 40mcg T3 - Hyper symptoms

TSH 2.11 T4 <0.1 T3 - 8.6 (3.8-6)

October 2016 - 40mcg T3 - Massively Hyper symptoms

TSH 3.8 T4 <3.2 T3 6.9 (3.8-6)

December 2016 - 30mcg T3 - Both Hypo/hyper

TSH 4.56, T4 <3.2 and T3 6 (3.8-6.7)

April 2017 - 30mcg T3 - Hypo

TSH- 10.18 T4 - <3.2 T3 - 4.5 (3.8-6.7)

June 2017 - 30mcg T3 25mcg T4 - hypo

TSH 2.83 T4 5 (12-22) T3 5.02 (3.1-6.8)

As you can see the last results is a little better. None of my T3 levels were that bad throughout apart from when stayed purposefully hypo towards the end. Symptoms of hyper included Nausea, hyper reflexes, shakiness, toxic feeling and would vomit if took more T3. Hypo are the usual with headache. The first result is a little irrelevant as was during a gluten trial which always raises my tsh high but still shows massive discrepancies between T3 levels and tsh so included.

In regards to possible issues:

Nutritional levels - were always much worse in the period before 2013 when I gave up gluten with stable thyroid levels so doesn't make sense to have caused this.

Sugar levels - always unstable before 2013. Have been stable since.

Cortisol - was very low with visable indications of failing adrenals before 2013 - reversed since then and have retested just to be sure and waiting for results.

Inflammation markers - always high before 2013 - None since or under range.

No longer any indications of stomach issues or intolerances.

Nothing has shown up in any other labs - kidney function/liver function/electrolytes etc.

So basically, just looking at results, is there anything else that can cause raised TSH when Thyroid hormone is okay or cause unstable results that I can look into or rule out- even minor things?

Thanks

[greygoose]

Biotin? TSH antibodies? Time of day? Eating?

[Saggyuk in reply to greygoose]

Thanks. No biotin, only iron throughout which had been on in all previous years. Time of day and eating the same.

Antibodies, no idea as not tested. Came back high in last result but maybe because had been hypo the last six months??????

[greygoose in reply to Saggyuk]

No, not Hashi's or Graves antibodies. TSH antibodies, which skew the TSH test. Diogenes has written about them, if you care to look through his responses on his profile.

Oh, and if the TPO antibodies come back high just once, then you have Hashi's - which, of course, will mess levels around - but that has nothing to do with being hypo for six months.

[Saggyuk in reply to greygoose]

sorry, I meant, I tested positive for hashis decades ago but figured wouldn't have them any more as thyroid had appeared to have given up the ghost and didn't test them throughout this time. Was surprised when they just came back both positive. It was you that suggested it might be because I had raised tsh trying to force my thyroid to work even though it can't and might be just enough left causing antibodies lol.

Ah sorry, was reading in a rush. TSH antibodies - yes that might make sense - I will have a look though

[greygoose in reply to Saggyuk]

Ah, ok, I see what you mean! Yes, I did, you're right. But I misunderstood what you just said, here. I thought you meant that you'd developed Hashi's because your TSH had been high, when you didn't have it before! lol Never mind, my bad.

[Saggyuk in reply to greygoose]

Ha not having much luck finding anything unless you mean graves antibodies???? I found a post mentioning TSHab but can't find anything else on google and also some confusing things on Trab and tsab and tsbab and few others lol,are these them? Either way, doesn't look likely I'd be able to get these tested anywhere lol. I'll have a closer look when have more time thanks

[greygoose in reply to Saggyuk]

No, I don't mean Grave's antibodies, I mean antibodies that affect the testing of the TSH and cause the result to be high. And, the only way to find out if it's that is to get your TSH tested in a different lab. It's not you that has the antibodies, it's the machine that tests the blood, as far as I know. Did you look through Diogenes' responses, as I suggested?

healthunlocked.com/user/dio...

You might have a bit of a hunt on your hands. It was a few months ago.

[Saggyuk in reply to greygoose]

Ahhh, the last results were tested in a different lab - the others probably all the same.

Yes, I promise, I did look at diogenes post log thing but got to page 10 and gave up, it was so difficult not being in date order and having other posts diogenes had commented in too mixed all together.

I will hunt again when I have a few spare hours

[greygoose in reply to Saggyuk]

Well, there you are then. Go back to the old lab and get tested again!

[Saggyuk in reply to greygoose]

I'm getting tested in normal old lab in a month so will be interesting

[greygoose in reply to Saggyuk]

Yes, it will!

[greygoose in reply to greygoose]

Have a look at this :

ncbi.nlm.nih.gov/pmc/articl...

[Saggyuk in reply to greygoose]

Ah, I see, that is interesting but from what I understood, it was other strange antibodies (like ones against mice) the patient has in their blood which causes the result to be wrong in some assays ???

Well I can see if the next results are any better maybe, although my symptoms have been as erratic as my blood tests and I've tried my hardest to stay on the same dose so not sure if can be just interference towards the tsh in whichever form maybe. The last blood tests were after symptoms have been a little more stable.

THanks again

[greygoose in reply to Saggyuk]

No, they gave her mouse antibodies to get a reasonable TSH reading, I think. It's not very clear, but you get the picture.

[Saggyuk in reply to greygoose]

Turns out my cortisol is now somehow completely opposite to before and rather on the high side but this normally comes with a suppressed tsh so still not clearly the issue lol!

[mrsm49]

I have read about a lady with similar tsh probs (in relation to t4 and t3 like you) may be it is you!

I believe she is being studied at badildon hosp as an interesting case. She has some rare antibody to tsh I think she said they found.

[Saggyuk in reply to mrsm49]

THank you, do you know where you read about it?

[mrsm49 in reply to Saggyuk]

I'm only on two sites, this one and UK Without A Thyroid (a facebook group you can join if you've got no thyroid ) it must be one of those, sorry my mush brain can't remember which one x

[Saggyuk in reply to mrsm49]

Lol, now worries, I know that feeling lol! I'll see if google will come up with anything.

I haven't had thyroid removed but as you can see by complete lack of T4 above, it doesn't do anything anymore lol - does that count lol???