Recently diagnosed Hypothyroid - feeling a lot better after 3 months, now on 125 mg of T4 only

[Sleepman]

Hello wonderful group and thankyou for taking time and effort to share your knowledge, that helps so many. For the last week, I am feeling untired and vital for first time I can remember/many years.

I thought I would share as so many struggle, it may be useful to other who are recently diagnosed. I found it daunting that improvement would take quite a long time and there does not seem a lot written about speeding things up. Also that some continue to struggle but not a lot written about T4 working well on its own. Early days for me but ...

I was diagnosed early October with underactive thyroid, TSH 79 and no T4 measured. I am now on 125 mg of T4 for last 4 weeks (mixture of Teva(25) and Accord (100).

If you are generally healthy with no heart issues etc. then I would consider a push for early blood tests to ramp up the T4 dosage more quickly. I started at 50mg then after 5 weeks TSH still sky high ~50 and dose increased to 100mg with some negotiation. That blood test failed on T4 and vitamin D, so they repeated and I got another 25 mg after another 3weeks when TSH was still v high.

Nice guidelines expect about 150 to 160 mg for me as a final dose. 1.6 mg / kg

I have been on 4000 UI of vitamin D spray for a month and a vitamin B complex after bloods showed low or below range.(based on advice from here)

I have been gluten free for over a year as this was the start of fatigue journey. This has improved the bloating and helped my sleep. I did not have gluten antibodies, suspect I am gluten intolerant not celiac. I would have waited a year to get endoscopy scan and have to take gluten produces for many weeks, which I could not face.

Tips

Be kind to yourself - allow rest time. Let people around you know it messes you up and in time will hopefully improve. You are ill. I put my hand up and say sorry brain fog.

5 to 7AM for tables with only water and hot water till 10 ish. I am a late eater anyway.

Read this forum, to understand about vitamins, blood test times, when to take pills, etc etc.. There are it seems 10 to 15% who need different treating than just T4/Levo.

Get doctors to do blood tests as recommended on here (vitamins, minerals, diabetes and cholesterol)

Blood test for celiac - so many symptoms are similar.

Keep a diary of symptoms, I email myself with how I am getting on

drain fog, numbness, warmth levels, guts, etc etc.

I also logged in there doctors meetings, things to do and what's next - to stop me forgetting. Now I update it once a week, it was every few days.

I measure temperature under my tongue after a minute or so and think I have gone from 36.2 C to 36.6 or 7 over this 3 months. I did blood pressure too as I had access to machine (~£30 ish these days anyway) Also pulse.

I am in for bloods in early Jan and I am sending private finger prick check to monitor my health for T4 and T3 readings.

If things had not improved for me I would have been engaging a private endo to start looking at T3 levels and T4/T3 conversion etc.

Thank you once again to the kind kind people who share their findings and troubles that really help.

[Hedgeree]

Hi Sleepman,

That's good that you're feeling so well! I'm also new to thyroid hormones but unfortunately I was unable to take the prescribed dose so had to start very slowly instead.

From reading around the forum it seems that if you've been hypothyroid for some time it is possible that it is a struggle for your body to tolerate levothyroxine. It's taken me since August to get up to 25mcg as I could only tolerate tiny amounts at a time.

Best wishes.

[Sleepman in reply to Hedgeree]

Sorry to hear that your recovery is not going so well. There is such a significant number of people who struggle, it made me more anxious. I posted this to say some people are OK, to not worry the lucky ones like I seem to be.I did not find goods words in the post to say, I felt almost guilty feeling better, when so many struggle.

I think the "unthriving" group should be officially recongnised by Nice/NHS. This group should get T3 and T4 in NHS blood tests as standard and more frequently.

Good luck Hedgerley.

[Hedgeree in reply to Sleepman]

It's good to hear others experiences! Though don't apologise! Even though I'm only on 25mcg so far it's the best I've felt in a very long time once I got lactose and mannitol free levo sorted.

Thanks Sleepman

[FAB-jellybean]

Hi Sleepman , so good to hear you are feeling much better. Just a word of warning about mixing brands. Many of us cannot tolerate Teva brand and/or it is not absorbed properly. Personally I get 50mcg tablets prescribed (I go between 100 and 150mcg daily depending on what's going on). Believe it or not it was actually a switched on GP that suggested it to make sure I constantly got the same brand. Sadly I had to change surgeries when I moved or I would still be with them! There's not many thyroid switched on GPs around. I do well with Almus (Boots version of Accord if I remember correctly) and don't want to swap brands as I react to any changes. I cut the 50 mcg tablet in half to get the 25 mcg dose. Quite often we get a feel great feeling for a couple of weeks before falling back again if the dose still isn't quite right (both too much and too little). Just so you're aware. It can be a frustrating wait to get to 6-8 weeks to do the blood tests again to see what's going on. Best of luck and hope you continue to be one of the many who do great on levothyroxine alone. Merry Christmas! 💜