Help with results - feeling awful

[cazzaleo]

Hi all

I'm hoping you can help me with making sense of my most recent blood test results. To give you a summary of whats happened up until now, I've been feeling unwell for about 2 and a half years which was diagnosed as M.E. (terrible fatigue, pains, headaches and migraines, sore throat, swollen eyes, constipation, inability to tolerate any exertion etc). I wasn't convinced that everything was being done to get to the bottom of how I was feeling and after an NHS TSH blood test came back 'normal' I wanted to do a bit more digging - so I paid for private tests which showed low FT3 (and normal FT4 and TSH - I'll post some results in a moment).

So I started seeing a private endo who was willing to trial me on liothyronine despite me not being technically hypothyroid, which I started taking last March. We added levothyroxine about six months ago too.

During this last year my symptoms have still been up and down, and this last few weeks I've been feeling particularly awful - the fatigue and heaviness are pretty bad and I'm struggling to move my limbs.

Here are all the blood test results I've had since the initial private blood tests with details of what T3 and T4 I was taking at the time:

15/12/17 - no medication

TSH 1.23 (0.35 - 4.5)

FT4 15.2 (11 - 26)

FT3 3.4 (3.9 - 6.8)

24/02/18 - no medication

TSH 1.65 (0.35 - 4.5)

FT4 15 (11 - 26)

FT3 3.1 (3.9 - 6.8)

08/05/18 - 15mcg/day liothyronine

TSH 2.33 (0.35 - 4.5)

FT4 12.4 (11 - 26)

FT3 4.3 (3.9 - 6.8)

02/08/18 - 15mcg/day liothyronine

TSH 1.55 (0.35 - 4.5)

FT4 8.2 (11 - 26)

FT3 3.7 (3.9 - 6.8)

09/10/18 - 15mcg/day liothyronine PLUS 25mcg/day levothyroxine

NOTE - the endo specifically asked me to take my T3 and T4 in the morning before this set of bloods, so they are not directly comparable with the rest

TSH 0.04 (0.35 - 4.5)

FT4 13.5 (11 - 26)

FT3 7.9 (3.9 - 6.8)

07/11/18 - 15mcg/day liothyronine PLUS 25mcg/day levothyroxine

NOTE - these bloods were done by my GP so ranges are slightly different

TSH 0.02 (0.27 - 4.2)

FT4 33.1 (12 - 22)

FT3 9.3 (3.1 - 6.8)

11/01/19 - 15mcg/day liothyronine PLUS 25mcg/day levothyroxine EXCEPT every third day

NOTE - as endo was slightly concerned by my levels on the 9/10 blood tests I thought it best to reduce my levo a bit, hence I didn't take it every third day

TSH 0.04 (0.35 - 4.5)

FT4 13.5 (11 - 26)

FT3 7.9 (3.9 - 6.8)

So my main questions are:

1) how come my FT3 and FT4 jumped up so much between 9/10 and 7/11 particularly given I had taken my meds in the morning before the lower of the two and not before the higher of the two?

2) is the reduction in levo between the 7/11 tests and 11/1 tests enough to cause such a drop in FT3 and FT4 and an increase in TSH?

3) could this swing be explained by Hashi's? I haven't been diagnosed with Hashi's. I asked for both sets of antibodies to be tested when I first saw the endo and they were supposed to have been done but they only did the TPO which came back 24 (<34). I queried this with the endo recently and he said that it didn't matter that I hadn't had the other test because he was treating me anyway - but is it best to insist on getting the test done? Would that change anything?

Sorry for the long post! Id really appreciate your help. I have an appt with the endo on 4th Feb and want to make sure I fully understand what these test results mean before I go,

Many thanks!!

[SeasideSusie Remembering]

Cazzaleo

As I was reading through I wondered about Hashi's. When tested and TPO was 24 (<34) I think that's high enough to think Hashi's might be the problem and that the test was done when antibodies were at a lower level. As antibody levels fluctuate then I wouldn't be surprised if at some point another test would show them over range. I'd suggest retesting but do TG antibodies as well as TPO.

[cazzaleo in reply to SeasideSusie]

Thanks SeasideSusie!

Do you think it’s possible that the swing in results could be caused purely by the reduced levo?

I have always thought Hashi’s was a likely possibility given I have another autoimmune condition (psoriasis) and both my parents have/have had different ones too (psoriatic arthritis/psoriasis, sarcoidosis, Mum is also hypothyroid but not sure if she has Hashi’s).

[SeasideSusie Remembering in reply to cazzaleo]

I would be surprised if the small reduction in Levo could make such a big difference.

I take a combination of Levo and T3 and when I was tweaking my doses to find what suited me best, I reduced Levo by 25mcg a day (from 100 down to 75) and that reduced my FT4 from 19.5 to 12.8 so for you to go from FT4 33.1 (12 - 22) to FT4 13.5 (11 - 26) - which is only 17% through the range doesn't seem possible to me.

[cazzaleo in reply to SeasideSusie]

Thanks, I really appreciate having access to your expertise!!😃