Struggling to get levels right. : Hi all, I'm... - Thyroid UK

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Struggling to get levels right.

Hookie01 profile image
10 Replies

Hi all,

I'm currently on levothyroxine mercury pharma brand and really struggling getting my levels right. 125mcg feels too little, 150mcg feels too much, gives me headaches, makes me feel weak etc. Tried alternating between 125mcg and 150mcg but always feels like too much. What I don't get is when I increase it my heart rate slows and when I decrease it my heart rate goes up. I'm currently on 125, resting hr has gone up and average of 71bpm (I know that's not bad) but I feel more anxious, on 150 it goes down to about 65bpm. Has anyone got any advice they could give me? Also have noticed that after a certain number of hours after taking it I get between an hour or 2 where my brain loses it. I can't think straight, I get really anxious, can't get my words right, my mouth and throat go dry and I feel sick. Usually take it around 3am when I wake for a wee. Any help would be gratefully appreciated. Thank you.

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Hookie01
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SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

Three months ago all vitamins were very poor, TSH too high and Ft4 and Ft3 far too low

Feritin 39.2 (13-150)

Folate 5.85 (>3.89-19.45)

B12 62.7 (>37.5 - 187.5)

Vit D 52.8 (50-175)

TSH 16.9 (0.27 - 4.2)

Free T3 3.18 (3.1 - 6.8)

Free Thyroxine - 11.4 (12-22)

Have you had FULL thyroid and vitamin testing since then

Hookie01 profile image
Hookie01 in reply to SlowDragon

I did post my thyroid results again, not that long ago and that's when I went up to 150mcg. I haven't had vitamins done yet as need to wait until I have money as my drs won't do them all so its pretty pointless.

SkyBelle profile image
SkyBelle

You may be allergic some of the fillers. I had this confusion initially. After strenuously noting ALL fillers in two particular Levo Brands - I take the Wochardt Brand, excellent, 75mcg daily, Dr s were not brilliant, suggested I take 100"per day, haha, that dosage just gave me complications & blood pressure. I visited an Advanced Nurse who was brilliant, she explained how vitally important Vit D3 is with Hypothyroidism, went on that, what a difference to my well being. Am now on fortified Whey Protein, great boost for muscles & energy.

At the end of the day, I believe Dr's do not have sufficient training and seem to rely on blood tests rather than being competent at reading the patient.

I diagnosed myself and have just got back on the tennis court 70yrs old!!

Hookie01 profile image
Hookie01 in reply to SkyBelle

Hi Skybelle, well I think you maybe right. I do seem to be very sensitive to fillers, I had to stop taking teva and activis because of the side effects and this time I believe its the B complex I'm taking, its got glycerol in it and the symptoms I was having are the same as the side effects of that. I didn't take any today and have felt so much better! Have ordered myself some filler and binder free b complex so hopefully they will be OK. I also struggle taking vit d as it makes the whirring in my left ear worse, I have to take a low strength one as it stops me from sleeping otherwise, so probably not getting my vit d level up enough. I am making a conscious effort to sit outside on my breaks to try and boost my vit d.

Go you, that's brilliant 👏 I would like to change to wockhardt but don't think the drs would agree on it as it only comes in 25's doesn't it and I'm currently taking 125 and 150 in alternate days.

SkyBelle profile image
SkyBelle in reply to Hookie01

I would strongly recommend Wochardt, I had a lot of rubbish words thrown at me. I just changed Dr after Dr, on my fifth Dr who was fantastic, she told me that she has another patient who is sensitive to fillers. It is your Right as a Patient. Just connect with the Medical Association - they were well supportive to patients having problems.

All my knowledge took me four years to acquire after starting Levothyroxine.

I phoned nearly 20 pharmacies in the UK gathering info on 'the dosage'. One young Assistant suggested I take my Levo when I need it,! Best ever advice! Blood pressure normal etc - you really have to research yourself. With your sometime explosive highs etc I would guess that your Levo Brand is not good for you. Start of Covid my Pharmacy handed me Pharma Brand, I cut pill into thirds, took one third to test it, my BP went sky high, proof or what!!

The joys of getting it right but eventually you get there xx

Hookie01 profile image
Hookie01 in reply to SkyBelle

It certainly is a minefield! Its been 2 years next month that I had my thyroid nuked, been struggling ever since. Been doing lots of research lately, it has really opened my eyes, who knew taking vitamins could make you feel worse!! Will be researching everything I take from now on. God bless google is all I can say lol xx

SkyBelle profile image
SkyBelle in reply to Hookie01

Another thought! Re your sensitivity to vit D - by the way I take vitD3. Also have you considered a UV Lamp - great for Vit D deficiency - I must get one for my 6parrots!

Hookie01 profile image
Hookie01 in reply to SkyBelle

I have said this to my neighbour but wasn't actually sure if it would work, do they work then? Would probably benefit me in the winter aswell as winter makes me so miserable, I hate the cold. I swear I've got that SAD!! Guess I could only try, thank you xx

helvella profile image
helvellaAdministratorThyroid UK

Just a thought experiment...

If the higher dose makes your heart pump more efficiently, it wouldn't have to beat as fast?

(Mind, the heart and thyroid hormone is a complex area.)

Hookie01 profile image
Hookie01 in reply to helvella

Hi Helvella, I did wonder if that was a possibility. Its so hard to get a happy medium isn't it! Also with thinking it was the levo causing the other symptoms I reduced it so I may try going back up. Im sure I will get there one day!!

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