Hi It's been a while since I posted. I have had Hypothyroidism for 30 years after a partial thyroidectomy. About 6 years ago I started with severe symptoms of Hypothyroidism & was eventually referred to endocrinology. The consultant I saw said I had been undermedicated for years looking at a graph. He suggested I raise my Thyroxine from 75mcgs to 100mcgs then after another appointment from 100mcgs to 125mcgs in 2022. I was then discharged. I eventually managed a re referral in 2023 & a new consultant started me on a trial of T3. My Thyroxine was reduced & I started taking 75mcgs of Thyroxine & 20mcgs daily in 2 doses. ( I started very slowly with the help & advice of this group The trial ended up being a year till my first follow up due to a shortage of consultants.
I saw a new consultant in October last year when my bloods were TSH 0.02 (0.27-4.2) T4 13 (11-22) & T3 5.4 (3.1 - 6.8) He agreed that we should try to raise my T4 a bit so my Thyroxine dose was increased from 75mcgs to 100mcg daily. I saw him again in Dec last year when my TSH was 0.01 T4 18 & T3 4.9 I told him I had felt unwell & shaky & had palpitations on the 100mcg dose so had lowered it a bit to 87.5 mcgs one day then 100mcgs the following day & so on. We decided to stick to 87.5mcgs daily & repeat bloods in 8 weeks which will be next week. About 2 weeks ago I started to feel really unwell absolutely exhausted & actually had trouble staying awake throughout the day. I felt spaced out like I am drugged & was very unsteady. It settled a bit for a few days but then came back again this week & I've had to cancel any plans & just pretty much sleep since Monday. I called my Endocrine Nurse yesterday but unfortunately it was the rather unhelpful one ( we have 3 & the others are good). She didn't even ask my name & said it was probably something else. I'm sure it's thyroid related as this exhaustion is how I used to feel. My next appointment isn't until the end of March. I asked if I could have a blood test now but she said well it won't be looked at till your appointment. I feel like I need more T3. I have dreadful brain fog so can't work out whether I should take more T3 or T4. I have a hospital appointment tomorrow in a different area for minor surgery & know I'm going to struggle. It's 5 weeks till my appointment & I can't manage like this I'm not safe to drive or go out alone. Any suggestions of what I should do greatly appreciated.
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Otto11
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You have had lots of changes to your T4 dose,125mcg daily in 2022 and now currently 87.5mcg daily?We all know these meds are very individual and I am speaking from my own experience but I kept my levo dose the same when adding T3.I did tinker about with it at the start but kept it at 125mcg daily.I also only needed to add a little T3(a quarter of a pill 6.25mcg first thing in morning and then an eighth at 2.30pm)This small amount saw my T3 levels climb from 54% to 80%.Sometimes I think they are a bit heavy handed with the decrease in levo.Maybe you would have done better if left on 125mcg and a little T3 added.I feel for you regarding the brain fog,having it day after day is soul destroying.
Thanks. I realise that now. They did want to to reduce Thyroxine to 50 mags when starting T3 but I said no. I wish I had known to remain on at least 100mcg. Would you have your blood test now? Even though no one will looks at it for 5 weeks? I took an extra few micrograms of T3 last night to get through the evening but won’t have enough to do this for 5 weeks.
Trust me I’ve been there and it’s far from easy.It’s hard to be patient when all we want to do is feel well.Personally I think you need to up your T4 again to 100 or maybe even 125.As you know this is easier said than done when dealing with GPs.My doctor reduced my levo to 100mcg a few years back and refused to increase.My TSH was 8.04 but many won’t take action unless it’s over 10 or so.I had every symptom under the sun so had to take matters into my own hands.I used private blood tests and sourced T3 which was the game changer.The symptoms all dispersed and thankfully I am now back to full health.If you are taking a few extra mcg of T3 here and there any blood tests won’t give accurate results.You would need to be on a settled dose for about 6-8 weeks.
Hi, I do feel for you as have just been ill for a month with that RSV fluey virus and the flu , on top of my normal Hashimotos, and you have described exactly how I felt. My go to for any feelings of exhaustion is to ease my T3 dose upwards from twice to three times a day, as a short-term fix for a bit more energy, BUT, that might not be the appropriate solution for anyone else. Also, for me, certain foods will trigger palpitations and brain fog, others will trigger joint pain, and even just a change of the levothyroxine brand is enough to make me feel generally ill - get your GP to specify a brand(s) you know you get along with well on your medical records, it's worth it. That said, you are sounding really poorly, so try ringing your Endocrine nurse again to see if you can catch one of the more helpful ones.. It sounds like you could do with your appointment being pulled forward. Fingers crossed for you.
do you always get same brand levothyroxine and same brand T3 at each prescription
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)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
is this how you do your tests
what vitamin supplements do you take
Suggest you get tested now
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
Thanks. I always get the same brand of both T4 & T3 at least so far. I have had all my blood tests following the protocol. I’ve been taking Methlyfolate as my Folate levels are low I have a Vit D Spray & take Zinc as that too was low. I’ve tried B complex but they made me feel really sick. I have Solgar ones. I have B12 injections so my level is generally about 800-900. Today I’ve felt a bit better typically but have decided to get my bloods done next week as it will be 8 weeks since last dose change. Thank you for your help.
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