I wonder if you could look at my bloods after 8 weeks on levo/T3. I was originally on 100 mcg levo, taken off for 3 months to prove I needed it then given 50 mcg levo and 10 mcg T3.
serum TSH 0.70 miu/L (0.27-4.2)
Serum free T4 10.8 pmol/L (12.0-22.0)
Free T3 5.0 pmol/L (3.1-6.8)
I feel very stressed and tearful and breathless walking up slopes (No real hills in Essex)
My endo saw results and prescribed a further three months of T3 - no prescription change.
I’ve now been on T4/T3 for a week over three months but am worried about breathlessness although only out on walks on uphill slopes.
any advice greatly appreciated - thank you as always!
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Essexlil
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Your results show that a bit more T4 is necessary (why would he leave you under range?) as a general guide most people feel better with a fT4 around 50-70% when combining T3&4, as for the breathlessness have you had a full iron panel done? Low iron, ferritin, folate and Vit D can have this effect 🤗
Thanks oh no I was hoping he was ok but far from sure now! My B12 has always been low but I have been taking supplements but not had full blood tests for a while
"I was originally on 100 mcg levo, taken off for 3 months to prove I needed it "
It was this that made me cringe, it really knocks you back and likely dropped your vits and mins even lower hence the breathlessness as it effects your red blood cells ability to carry oxygen... If you have enough T4 I'd add in another 25mcg per day and give it 6-8 weeks 🤗
So you definitely need to increase levothyroxine to 75mcg daily
Retest in 6-8 weeks
When were vitamin D, folate, B12 and ferritin levels last tested
Breathlessness often low ferritin
What vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
hi SlowDragon, I’ll ring GP and ask for increase as you advise, thank you.
My vitamin levels were taken in August 23 after No levo for three months:
B12 283 pg/mL (197-771)
D3 97.7 nmol/L >50 sufficient for most people
Ferritin 251 ng/mL (13-150 ng/mL - 17-60 years I’m 67)
Folate 14.2 ug/L <3 ug/L suggestive of folate deficiency
I’ve been taking purolabs B12 1000 ug methylcobalamin
Pink tribe B complex
Advanced magnesium
Nature provides D3 + Mk7 K2 in cold pressed black seed oil 3000 iu
Omega 3 x 2000 mg fish oil
I do also have Sjögren’s.
I’ve also been very stressed as my 91 year old dad this year has been very ill and has developed dementia. I’m the only child but he lives too far away for me to be his carer so I’ve finally arranged with Social Services for his very good carer call in twice a day, but it’s been very stressful since the beginning of this year.
Once again, I really appreciate your time and help
Sorry to hear about your Dad poor you... It's a very difficult situation. Sending you hugs. Agree with others re Levo increase. In addition though your B12 is very low. I doubt 1000mg of B12 tablets would do the trick. What form of B12 do you take? Id definately get that rechecked Also go on B12d. org they have a great symptom checker.Has your GP checked you for PA.... Intrinsic Factor (picks up 51% of PA only) & Coeliacs? You need to have been eating gluten several times per day for 6 weeks before testing for Coeliacs.
I'm not sure what your Endo was planning.... Might be worth asking. Was he weaning you to T3 only. As I cannot see why else he would have your ft4 under range. Might be worth a chat.... and if the case you'd think he'd raise your Liothyronine. Lol... Personally though I'd be increasing my Levo though.
But your breathlessness could be linked to low B12 too. Commonly low in Hypothyroidism. Low B12 also cause a wide range symptoms but neurological ones stand out from the Hypo ones. Eg. Numbness, tingling, blurred double vision, sense of creep crawlies on skin, incontinence, robotic feel in legs are just a few.... like hypothyroidism B12d cause a wide range of symptoms.
Hi, thankyou I really feel as if I need hugs tears welling as I’m typing - sorry people far worse off! B12 is Purolabs 1000 ug methylcobalamin capsules and I’ve just stopped Pinktribe sublingual B complex. I was tested for PA about a year ago when I requested it and I wasn’t shown abnormal.
I think Endo just plans to keep prescribing T3/T4 unless I pay to see him again. He’s willing to prescribe privately without seeing me to save me money basically. I did see him initially when he said he wasn’t sure I needed levo as my antibodies were only low so he did three month trial without, that’s when everything went pear shaped so he agreed to levo and T3 and that was just over 3 months ago.
I’ll look up B12d org thank you for that. I’ll ask my GP if she can increase my levo. Thank you so much for your time and advice - we’d be lost without this forum!
Oh bless you. It is a great site. We all help each other out...
He sounds a bit odd tbh saying he didn't think you needed levo. Had he trialled you on combine thyroid replacement before or gone straight from levo to T3 only? Some people do only fair well on T3 only that is true but most of us do well on levo or a combined thyroid replacement. Usual routes to try in order would be levo, then levo plus T3, then NDT, then NDT plus levo or more T3, then T3 only.
Have a nosy at B12d.org. It's assessment tool is handy and you can download a book on B12 deficiency for free, written by a very good GP Dr Chandry. He has retired now.
Hi, he put me on 50 mcg Levo + 10 mcg T3 after 3 months off levo. Before that I was on 100 mcg levo. So after just over 3 months I’m on same dose for a further 3 months. I have just phoned GP surgery to ask for a levo increase so we’ll see.
I’ve looked on B12d and it’s very good - looked at Dr Chandrys book re connection with autoimmune diseases and dementia . It’s an eye opener that GP’s don’t test more often for B12 deficiency. My GP said I can’t have injections as not below NHS normal.
Yes the below B12 range is the trigger for starting injections BUT if you have neurological symptoms he should refer you to a neurologist and should start B12 jabs and not delay.. This is to avoid damage. That's the NICE guidelines. Worth politely pointing this out.
My GP was the same. She did refer me on to neurology but I decided to start jabs as wasn't prepared to wait as I was really struggling with numbness walking. Etc. I self injected - the difference was massive. Went back to GP after a month. She could see straight away the difference and was amazed. Still couldn't give me jabs until neurology saw me... at the time local CCG wouldn't let her. . That took 7months so carried on self injecting. Neurologist supported me. All in all took 9months to get them on NHS.... Far too long!! By then I offered to carry on self injecting if they provided the vials and needles ets. Ended up with b12 vials & sharps box on script and nurse supplying needles syringes.
Hi, I don’t think I have any symptoms 🤞but I’ll keep a close eye on it. I’ve just ordered sublingual B12 as have been taking capsules. I’m having a blood test in 8 weeks as my GP has agreed to increase my levo from 50 to 75 so I’ll ask for full set of tests (my GP is usually very good and will do the lot for me as I have Sjögren’s too). Thank you and it’s helpful to know that if I get symptoms I can push for a referral.
Hi Essexlil, I also live in Essex, Brentwood and just wondering if we might have the same private Endo? I’m not sure I want to listen to him if this is how you were treated. My Endo works out of Nuffield Hospital.
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