What is going on with my test results? Also surprise response to from my Endo to my recent letter!

[DeniseR]

Okay where to start, test results I guess.

Test results Jan 13

On 50mcg T4 and 20mcg T3

FT3 5.1

FT4 11.03

TSH 0.07

Test results March 13

On 50mcg T4 and 10mcg T3

TSH 1.46

Test Results April 13

FT3 3.9(3.5 - 6.5)

FT4 10.3(10.3 - 23)

TSH 0.16(0.35 - 5.5)

I know my FT4 could be dropping due to me taking T3 but it seems my TSH is creeping up(although obviously still low) and really don't understand why my FT3 has dropped??? Can anyone explain?

Secondly after writing a very long letter to my endo, with research examples attached, going into all the possibilities of what might be happening to me and why the T3 isn't working as well, he called me.

He has said he will use peer pressure to get whatever department to test me for Lyme disease(I know tests are always accurate but better than not having it). He said he can answer some of my questions and wants to discuss the others. He did say he will do whatever it takes BUT can only work where there is actual evidence to support a theory and has to stay within proper medical practice(or words to that effect).

The nice this was that he said he knew I wasn't pushing all this for the sake of it and that he totally understand that I'm suffering and just want to get better. He said he can only deal with the endochrine system but that there are other specialists that he can also refer me too if necessary. It's so nice to here something positive from the medical profession.

[Moggie]

Hi Den,

Sorry you are STILL not feeling any better. The only reason I can think of for your FT3 to go down and your TSH to be going up in an absorption issue. Somehow somewhere along the line you are not absorbing your T3 to its best ability. Have you tried keeping it well away from food and sticking to the two hour rule as you would with T4.

Remind me again Den if you have ever had your antibodies checked - in other words are you Hash's and have an autoimmune illness as this can have a really big impact on the gut and how you would be absorbing your meds. Have you ever tried going wheat/gluten free for any length of time and if so did this have any kind of result?

How are your palps? Have they got any better or are they still the same.

Its like the blind leading the blind with me and you aint it.lol. - both still searching for answers and both still feeling ill.

Wish I could help more Den and think of something miraculous that hasn't been thought of before but the way my brain fog is at the moment I'm lucky to be able to remember my name let alone a solution to a complicated puzzle like this one.

Moggie x

[DeniseR in reply to Moggie]

Hi Moggie

I'm not too bad, managing to get through the day, so still better than I used to be. Just can't do all the stuff I'd like to, getting very tired during the day and having terrible moods(because I'm tired I think). As long as I don't do too much( like walk too fast lol) I'm not in any pain really. Also finding it very hard(harder than normal) to concentrate or even think, having issues writing and also anxiety. You know how it is though, determined to get my life back!

I do take my T3 separately from other meds and away from food etc. I have had TPO antibodies tested which came back <10 I believe, they wouldn't test the TgAb as they said there was no point. I have been wheat free a couple of times now but didn't feel any different, so don't think this is the issue - I don't eat a lot of it anyway.

Palps are still here, went back to GP as told to and have to have a 7 day Ecg but have to wait a month as the monitors are all being used! lol

Thanks for trying to think of what the issues might be Moggie, hoping the endo might actually have something constructive to say next week. Hopefully we'll come up with the answers between us lol

I know how you feel, I'm surprised I can remember my own name also!

D X x

P.s. How are you feeling now, any better at all?

[Moggie in reply to DeniseR]

In one word Den - NO - like you I am just (and only just) still managing to work. I work in accounts and trying to do figure work whilst the brain fog is so bad, and the tiredness is all consuming, is very hard.

Am now looking into my parathyroid as these results have been above normal a couple of times now (plus my VitD issues) and I want answers. Seeing my endo next week and putting my findings to him to see if I can have a scan.

We WILL get there in the end Den its just a case of trying to remain strong until we do.

Moggie x

[DeniseR in reply to Moggie]

Aaaw, sorry to hear that Moggie, I know you said you were feeling pretty awful. It's difficult trying to work when like this isn't it? I think I just lost a prospective client as I got the date wrong when discussing her wedding - twice!

Let me know how the parathyroid investigations go. I have also asked my endo about these amongst other things - I want everything ruled out as much as possible, then we might actually get somewhere.

What haven't your Vit D issues been sorted? Saying that, mine are still under normal in my last tests, even though I have been taking D3 for about a year, Gp says it's gone up from last time so not to worry - Typical!

Good luck with it all Moggie

D X x

[Moggie in reply to DeniseR]

When your parathyroid goes wrong (hyper) it tricks the body into thinking that it doesn't have enough calcium so it doesn't matter how much vitD you take (ringing any bells Den) your levels wont go up or, if like me your GP gives you a massive does of vitD, it will go up for a few months and then the body will turn it into calcium so you will become low in VitD again. Unfortunately the body then deposits this extra calcium in unwanted places such as the gall bladder and heart.

Heart palps are one of the symptoms of your parathyroid going wrong AND (this is what made me sit up and listen Den) you will get a strange reaction when you take VitD as the heart palps will get worse. This is what was happening to me Den and it was really noticeable as I was taking a huge dose of VitD. I also have high ALP levels (kidney function) which is another symptoms and these are gradually getting higher SO, armed with my new knowledge and copies of my blood results (which he also has but has not said anything about) I will be asking him about all things parathyroid and if he dismisses it I want him to explain (clearly and comprehensively) WHY. How about that for a plan Den.lol.

Have linked you a good parathyroid article.

stopthethyroidmadness.com/p...

Moggie x

[DeniseR in reply to Moggie]

You go Moggie! lol They always seem to skirt around the subject don't they, make sure you do get a clear response.

So much info again but same symptoms and diagnosis not an exact science as always, how would you know if you don't have obvious bloods tests? All of these conditions are just so vague and similar, just got to rule out one at a time until we find the answers.

I can't remember when my palps started now but I'm not on a very high dose of Vit D anyway.

I think my kidney function is okay although did see stage 2 kidney disease on some test results from while back but probably nothing to do with the vitD and considered pretty normal I think.

I hope you get some answers this time! x x

[Moggie]

p.s. Forgot to say that in Natalie's blog about Lyme's one of the first things she mentioned was how important it is to get a doctor that specialises in Lyme's so maybe you might want to do some homework regarding this and not leave it down to your endo as you could end up wasting the appt.

Good to see the endo is fully on board Den and is doing all he can to help.

Moggie x

[DeniseR in reply to Moggie]

I will do Moggie, Natalies blog was very informative. I think the endo is hoping to have the results by visit next week. If he suggests seeing anyone else(for anything) I will definitely say that I want to choose who!

Thanks Moggie x