T3 much better but feeling worse again!

[crabapple1]

I'm on a high dose of levo, 200mcg per day (I weigh 80kg right now), and just got test results back that show my T3 levels are much improved. However, of course, my TSH is now below range and my T4 way over. My ferritin, etc, is as bad as it's ever been, despite taking 210mg of ferrous fumarate each day.Worst of all, I'm now feeling rubbish again after a short spell of feeling really quite good. I'm now fatigued, lots of headaches, gaining weight without trying, and just generally feeling foggy and heavy and lethargic all the time. Dodgy tummy often, I fairly regularly have no appetite (which makes the weight gain all the more galling!) and my periods are back to being extremely heavy.

Is the way I'm feeling due to too much levo? I thought I would feel better given that my T3 is now sky high, it's the highest it's ever been!

I have an appointment with my Endo on 1st August and he will definitely reduce the levo dose. I live in an area where I can't get T3 on the NHS.

Here's my latest test results for reference. I did the tests according to all the advice you guys give on here - before 9am, no levo 24hrs before, no biotin for a week before, etc:

Serum TSH level 0.13 mu/L [0.3 - 5.0]; Below low reference limit

Serum free T4 level 25.8 pmol/L [7.9 - 16.0]; Above high reference limit

Serum free triiodothyronine level 5.5 pmol/L [3.8 - 6.0]

Full blood count:

Haemoglobin concentration 115 g/L [115.0 - 165.0]

Total white blood count 7.0 10*9/L [4.0 - 11.0]

Platelet count - observation 279 10*9/L [150.0 - 400.0]

Haematocrit 0.34 L [0.37 - 0.46]; Below low reference limit

Red blood cell count 3.89 10*12/L [3.8 - 5.8]

RDW 15.2 % [11.0 - 14.8]; Above high reference limit

Mean cell volume 87.3 fL [80.0 - 100.0]

Mean cell haemoglobin level 29.6 pg [27.0 - 32.0]

Mean platelet volume 7.8 fL

Neutrophil count 4.92 10*9/L [1.7 - 7.5]

Lymphocyte count 1.32 10*9/L [1.0 - 4.5]

Monocyte count - observation 0.53 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.19 10*9/L [0.0 - 0.4]

Basophil count 0.05 10*9/L [0.0 - 0.1]

Serum ferritin level 12 ng/mL [15.0 - 300.0]; Below low reference limit

[SlowDragon Ambassador]

Ferritin is obviously dire

Are you vegetarian or vegan?

Lots of members having great results improving low ferritin with Three Arrows heme iron supplement

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

You need B12, folate and vitamin D tested

What vitamin supplements are you currently taking

Which brand of levothyroxine are you currently taking for 200mcg dose

Suggest you reduce to 175mcg and 200mcg alternate days initially

[crabapple1 in reply to SlowDragon]

Thanks for your reply SlowDragon.

I'm not currently vegetarian or vegan. I don't eat much meat though. I was vegetarian from the age of 10 until I was 32.

I have read posts about Three Arrows and have been considering getting some.

I currently take chelated magnesium, b12 drops, Thorne Basic B, myo-inositol, and Urgent-C sachets.

I don't take Vitamin D on its own, however it's in the Urgent-C - 12.5mcg - is that enough?

I'm on Teva brand of levo.

Noted re the dose reduction. I will ask my Endo about doing it that way. Wonder what he will suggest!

[SlowDragon Ambassador in reply to crabapple1]

On Teva ……are you lactose intolerant or on dairy free diet

[crabapple1 in reply to SlowDragon]

No, neither.

[SlowDragon Ambassador in reply to crabapple1]

You might be astonished if you actually tried dairy free (as well as gluten free)

It’s so much easier these days

Lots of dairy free products

First step stick to gluten free first

Then try dairy free as well

[crabapple1 in reply to SlowDragon]

Thanks SlowDragon. Your encouragement is really appreciated!

[crabapple1 in reply to SlowDragon]

Hi SlowDragon, I've been looking into the Three Arrows product and have read the posts you linked. Do you know if there would be extra customs charges on receipt for it, seeing as it's shipping from the US? Or is there a European supplier maybe?

[SlowDragon Ambassador in reply to crabapple1]

Suggest you write new post asking members

My ferritin is always too high (around 300) …..so never taken any iron supplements

[SlowDragon Ambassador]

Looking at previous posts

You have Hashimoto’s

Previous B12 was terrible too

Obviously lots of gut issues

Are you on absolutely strictly gluten free diet and/or dairy free diet

If not get coeliac blood test BEFORE trialing gluten free

[crabapple1 in reply to SlowDragon]

Not gluten free. Been trying, keep falling off wagon.

Has coeliac test last year, it was negative.

[SlowDragon Ambassador in reply to crabapple1]

Do you see improvement when you are strictly gluten free

[crabapple1 in reply to SlowDragon]

Last time I was strictly gluten and dairy free, 10 years ago, I definitely did. I just don't know how I could sustain that diet now I have two small children and I work full time. I remember spending a LOT of time cooking, and thinking about eating, back then.

As I just said to pennieannie, I think it is just lifestyle changes now isn't it. I've exhausted all other avenues.

[gabkad in reply to crabapple1]

What about taking progesterone to reduce menstrual blood flow? Don't they have this in the UK? 200 mg per day ought to thin the lining of the uterus so you are not bleeding out every time you get your period. If you haven't seen a gynocologist yet, you should.

[pennyannie]

Hello Crabapple :

How are you functioning with a ferritin of 12 and below the reference range ?

Everywhere I researched for my own low ferritin of 22 stated that no thyroid hormone replacement works well until ferritin is at least over 70 ;

I know now I need ferritin at around 100 : folate 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100 :

Since you are under an endocrinologist are there o going further investigations into your results as from Full Blood Count down there are several readings at the bottom of the range or under range :

eg ; Haemoglobin :Haematocrit : Red blood cell count : RDW :

Sorry I don't know enough to advise on any of these above readings :

Once your core strength vitamins and minerals are up and maintained at optimal you will likely find your conversion of T4 into T3 improved and likely on less Levothyroxine than you are now taking to achieve a T3 at around 70% with a T4 in the range.

Just looked back and see that you have Hashimoto's Auto Immune Thyroid Disease - so there could well be absorption issues and it is most important to first heal the gut and consider food intolerances, especially gluten, dairy and wheat but first - has your endo checked you out for celiac disease ?

You might like to read around on Dr Izabella Wentz - thyroidpharmacist.com

[crabapple1 in reply to pennyannie]

Thanks for your reply pennieannie.

I function by telling myself I am weak and lazy and to pull myself together and carry on (I know that isn't ideal by the way!) My husband is very fit and healthy (he's a runner) and we just kind of have this narrative where the way I feel day to day is obviously because I don't run or do any other exercise, and because I don't make the lifestyle changes I know I need to make, and that I'm just a bit of a moaner. Und so weiter. I spend 90% of my day wishing I could just lie down and go to sleep.

That info on optimal ferritin levels is interesting, I've a long way to go haven't I.

I've been checked for coeliac but it was negative.

I had previously hoped that by getting my T3 levels up I would magically feel a lot better, but I can see that it really is a case of lifestyle changes only now isn't it.

[pennyannie in reply to crabapple1]

Well it's more a matter of restoring and replenishing your body core strength to optimal levels of vitamins and minerals so you can do stuff as putting the cart before the horse ain't gonna work.

It took me around 18 months to build up my core strength vitamins and minerals with ferritin being the slowest to creep up the range.

i took an iron bisglycinate - marketed as a ' gentle iron ' - 3 x 210 mcg x every day once I had had an endoscopy and a colonoscopy to rule out anything other issues - maybe because of my age as then I was around 67/8 - I couldn't tolerate the NHS iron tablets as they upset my stomach too much.

i also ate liver a coupe of times a week and drank down sachets of Spatone Liquid Iron.

Maybe your husband can do a sponsored run for Thyroid UK - the charity who support this forum - head office have posted something today - and you can become energised collecting the sponsor money !!

And yes, you do need to look at life style changes especially around food as these can be triggers for those with Hashimoto's AI Disease.

[crabapple1 in reply to pennyannie]

Thanks for the insights. I think I have been underestimating the amount of time it might take to address this - 18 months of sustained effort is a real achievement!

I find myself in terrible peaks and troughs...when in a trough I get very depressed and generally stop taking, or forget to take, all of my supplements and often my levo too. When I emerge I try to get back on track but the peak never lasts long enough to make a difference.

My troughs obviously coincide with very heavy periods so I think I just lose whatever I manage to build up during the preceding peak!

[GlowCoach Administrator in reply to crabapple1]

As you have identified very heavy periods as an issue for you, have you discussed this with your GP or probably better still a contraceptive/womens health clinic? There may well be something to reduce or stop your periods which would help you in many ways.

With ferritin as low as yours its no wonder you are struggling all round. Working on that will really help you.

Could your husband prompt you to keep on top of your Levo and supplements? He could be your coach. 🙂

[pennyannie in reply to crabapple1]

Yes it is a full time job - but so worthwhile.

It's easy for me to say this as at the time i was very unwell and basically housebound.

[Beau55]

glad to hear you had a good patch but not so good it’s not lasted for you!

Just looking at the obvious your t4 is way over range. I suspect you have had to get it that high in order to convert enough to feel any difference. If I were you, I would begin reducing the Levo and slowly adding in some t3 and retest. Your conversion could be poor due to nutrients as mentioned above but it’ll also be hard to improve them until you are on the right dose of thyroid medication to relieve the symptoms.

Have you tested your cortisol? It’s worth looking at as it is normally low due to prolonged hypothyroidism and it can make using your thyroid meds more difficult.

if you can’t get t3 prescribed on the nhs you could go private it affordable or the other option is to source it yourself with guidance

[crabapple1 in reply to Beau55]

Thanks for this Beau. I agree, this is the first time my T3 has ever got more than 50% through the range. The cost of getting it there is obviously sky high T4!

Previously I would have thought adding T3 would be the magic bullet I was being denied...but I feel as bad right now, with great T3 levels, as I did when they were below range.

What do you think - is it my anaemia situation that's making me feel like this, or the high T4?

[samking5 in reply to crabapple1]

Your t4 is so high, if I had ft4 that far above range I wouldn’t be able to move I don’t think