Meds change? Apart from going GF, I am at a loss

[Murphysmum]

Many thanks to those who answered my previous post with my latest results on Friday.

Most suggested going gluten free, something I have fought against for the last year while altering medication levels, but which I am now up for trying. If it relieves my symptoms then fab.

No one has mentioned any change of meds to me though and I’d like to know peoples thoughts on my options. Given past results, it has been mentioned that maybe some T3 in addition to my levo, would help. When I saw Dr Toft he didn’t seems to think so and went for a dose increase instead. Now I’m overmedicated and feeling it.

I’m confused because now my T3 is at the top of the range but will surely drop if I drop my levo dose. Although most of my symptoms disappeared, the lack of clarity of thinking and the muscle weakness remained, in a big way. Does this mean T3 isn’t the answer?

What about other medication options? I understand that gluten may be poisoning my system, but couldn’t it equally be the ever increasing amounts of levo? Just to be clear, whilst at the very start of this I could barley stand and had every hypothyroid symptom under the sun, muscle weakness and feeling like my arms and legs were filled with concrete, wasn’t actually one of them. This has got worse as other symptoms have got better. The brain fog, well it’s just constant although at least I can string a sentence together now - I certainly couldn’t during my “crash”.

I just feel a bit lost. I appreciate thoughts on a gf diet, please don’t think I’m ungrateful, I’d just like to know all my options at this point. I don’t know whether to go back to see Dr T as tbh, it was a very expensive dose increase, that if I’d been very clear with my gp, I may well have got anyway. Do I go back to my gp with all my result and look for a med change? Do I go it alone?

I feel like I’m so very nearly there. Someone must have had lingering symptoms like me and found a way to clear them? I really want my daily exercise and healthy eating to pay off but I feel like there’s a brick wall within me that’s just not for budging so my exercise never gets easier no matter now much I push and my weight never changes despite me being very disciplined.

Help? Confused.com here...

I will attach my latest bloods but all my other for the last year are on my other posts too, going from under medicated to over but never any sweet spot 🙈

Thank you knowledgable people.

PS I realise if I go gf and change something else I won’t know which one is helping... I just want to know what other things I could try from here.

[MaisieGray]

"I’m confused because now my T3 is at the top of the range but will surely drop if I drop my levo dose." Not necessarily. Too much T4 can shift conversion of T4 to RT3 from T3; so reducing the excessive T4 can have the effect of reversing that shift.

[Murphysmum in reply to MaisieGray]

Ah ok. Thank you.

And thank you for your other responses too... I have a lot of questions!

[SeasideSusie Remembering]

Murphysmum

You have so many other posts that it would take a respondent a long time to look through them all to find other results, it would be best if you could list any past results you'd like members to take into consideration and comment on.

At the moment, those results above show that your ferritin needs improving to at least 70, your Vit D needs improving to between 100-150nmol/L (according to the Vit D Society), your Active B12 has just scraped over the level below which testing for B12 deficiency is recommended (that level being <70). Optimising those may help, as can addressing the raised antibodies.

Your current results show that a decrease in your current dose of Levo, to bring your FT4 down into range, so that we can then see what your FT3 level is like, would be a good idea. That may be in your previous results.

[Murphysmum in reply to SeasideSusie]

Thanks SeasideSusie

Ok so results from last May (I'm sure I was on 150mcg levo then) were:

TSH 0.247 (0.27-4.20 mIU/L)

T4 28.500 (12.00-22.00 pmol/L)

T3 5.14 (3.10-6.80 pmol/L)

RT3 36 (10.00-24.00 ng/dL)

Thyroglobulin ab 11.900 (0.00-115.00 IU/mL)

TP antibodies 297 (0.00-34.00 IU/ml)

In October, I had been on a dose of 175mcg levo and was advised after these results to increase to 200mcg:

TSH 0.305 (0.27-4.20 mIU/L)

T4 20.200 (12.00-22.00 pmol/L)

T3 4.61 (3.10-6.80 pmol/L)

Thyroglobulin ab 14.500 (0.00-115.00 IU/mL)

TP antibodies 205 (0.00-34.00 IU/ml)

B12 66.600 (37.5-188 pmol/L)

Folate 8.54 (3.89-26.80 ug/L)

Ferritin 48.2 (13.00-150.00 ug/L)

Ferritin is still dropping despite a course of self-bought iron tablets pre Xmas and eating liver/pate every week.

Everything else is increasing in line with me supplementing so happy with that and will continue to do so.

Antibodies are coming down and I supplement with selenium and zinc so I guess that’ll help that. Also gf.

I just don’t know what to do with my levo. I have already decreased back to 175mcg but as I have never been well on any amount over the last year, I just don’t see where to go now?

[SeasideSusie Remembering in reply to Murphysmum]

Thank you for the results

From May

TSH 0.247 (0.27-4.20 mIU/L)

T4 28.500 (12.00-22.00 pmol/L)

T3 5.14 (3.10-6.80 pmol/L)

RT3 36 (10.00-24.00 ng/dL)

Those are virtually identical to mine when I first joined the forum looking for an answer. My TSH was lower (supressed), as was my rT3 (just inside top of range). Mine were

FT4: 28.59 (12-22)

FT3: 5.14 (3.1-6.8)

I suspected poor conversion of T4 to T3 as FT4 was 165% of range and FT3 55% of range (your percentages are the same with that test as mine were). I did the 24 hour urine thyroid test to check, and this confirmed poor conversion so I had no doubt as to which route I had to take - add T3 to less Levo. My extremely distressing encounter with an endo years ago, and a TSH obsessed doctor, made me turn to helping myself.

However, the difference between you and I is that I don't have Hashi's.

In October, you results

TSH 0.305 (0.27-4.20 mIU/L)

T4 20.200 (12.00-22.00 pmol/L)

T3 4.61 (3.10-6.80 pmol/L)

Again, these show poor conversion with FT4 being 82% through range and FT3 being 41% through range.

Your nutrient levels are slow to rise, that may be due to the Hashi's and that may improve if you go gluten free. If you can optimise your nutrient levels, see how your thyroid levels are then, you may find that you need T3. My guess is that you do, but it's not worth adding at this point, you need to improve your nutrients levels first, especially ferritin.

I also tested adrenals - 24 hour saliva cortisol/DHEA test (Regenerus and Genova do this test) and I had a problem there too, which I am addressing.

[Murphysmum in reply to SeasideSusie]

Thanks SeasideSusie ! I was like “yay, at last someone like me” ...until you mentioned the Hashis part! 😂 Still very encouraging though.

My gut feeling has always been that I need T3 but that’s just my gut. I just really feel like some “oomph” is missing - I don’t know how else to describe it.

I totally agree with increasing my vitamin levels but I’m struggling with the ferritin and I’m getting frustrated! I have a big year this year and I want to feel consistently better 😩

[SlowDragon Administrator]

Prof Toft said at recent talk in London he always recommends increase in Levothyroxine first, as it's easier and cheaper.

If that doesn't help, to then to try less Levo and adding T3

Why not go back and discuss options

But still I would try gluten free FIRST

[Murphysmum in reply to SlowDragon]

Thanks SlowDragon . I wondered if this was his plan all along but keep remembering the “ah, your conversion is fine..” comment and don’t want to spend money on another appt to find he blames something else - also something he talked about I believe.

I am going to try gf though so maybe I bide my time and concentrate on that and my vits like Susie suggested too

Ugh, it all takes so looong! 😩

[SeasideSusie Remembering in reply to Murphysmum]

Which results were they where he said your conversion was fine?

[Murphysmum]

Erm, must have been the May ones SeasideSusie , so the first set I’ve written out above 🙂

[SeasideSusie Remembering in reply to Murphysmum]

T4 28.500 (12.00-22.00 pmol/L)

T3 5.14 (3.10-6.80 pmol/L)

Your FT4:FT3 ratio with those results are 5.54 : 1 and good conversion is said to take place when the ratio is between 3: 1 and 4:1 so considering your FT4 is 165% of range, yhour FT3 is 55% of range and you have very high rT3 I really don't see his logic.

Your latest Medichecks results show a ratio of 4.63 : 1 so still not great, the only thing than can be said about your latest results is that your FT3 is high in range but you need your FT4 very over range to achieve that.

[Murphysmum in reply to SeasideSusie]

And I feel jittery, hot and have palpitations on that dose, so not great

[Murphysmum]

So as not to start another post SeasideSusie and SlowDragon - and thanks for your responses, I am on my first gf day today 🤞🏻 - just a general query:

Is levo + T3 preferable to NDT or levo + NDT?

I only ask as my dad was type 1 diabetic and I remember him having a few battles with gps and pharmacists who tried to switch him from porcine (I think) insulin to a synthetic brand. He swore the natural one was much better (for him).

It makes me wonder about NDT. So I thought I’d ask what criteria would dictate one way or another.

I guess there are no hard and fast rules, just what works for the individual.

[SeasideSusie Remembering]

Is levo + T3 preferable to NDT or levo + NDT?

It's just down to the individual.

NDT has a fixed ratio of T4 and T3 which suits some people not others. That ratio is approximately 4:1. It didn't do it for me.

Synthetic you can tweak doses to suit. I take Levo + T3 in a ratio of roughly 6:1 which seems to suit me.

NDT isn't all that natural anyway. Yes, it's made from pig thyroid but has synthetic fillers, without which you can't make a tablet.

[Murphysmum in reply to SeasideSusie]

Thank you. That’s very helpful.

It seems there are many options and it’s a case of finding what works for you. I had hoped that I’d find somewhere that I was stable on levo as I had been for so long by it seems not. Granted I have done work to do in my vitamins but I can’t see that shifting the fatigue that I feel in it’s own.

Time to make a change I think, hopefully with a professional on my side, but if not I’m ready to go it alone 😊

[Murphysmum in reply to SeasideSusie]

SeasideSusie , what is the urine test you mentioned to check conversion?

How does that work?

[SeasideSusie Remembering in reply to Murphysmum]

Genova Diagnostics do a urine thyroid test, it's collected over a 24 hour period (crucial to get timing correct, if you decide to do the test ask me about that as I've done it twice) and it tests T4 and T3.

Ordered with ThyroidUK as your "practioner" as they don't deal direct with the public.

thyroiduk.org/tuk/testing/g...

Test code END08, on page 3 of their pdf leaflet here:

thyroiduk.org/tuk/testing/G...

Sample report here:

gdx.net/uk/core-uk/sample-r...