25mg thyroxine and TSH worse ..... is it just wrong dose?

[Saz88]

Hi all,

I got put on 25mg of thyroxine 6 weeks ago as my TSH was 6.57 ( top of normal range-4.40) positive antibodies which was picked up with investigations into blood pressure. This was largely for fatigue etc. After the first week I felt a lot better for two weeks but has felt worse again of late. Today at the six week point my repeat bloods show my TSH is now 6.87. Is this normal? I thought even a low dose would affect it a little?

Thanks in advance

[greygoose]

It's not exactly the wrong dose, it's just a starter dose. Starter doses are usually 50 mcg, but a lot of doctors just don't get that. The idea is that you get retested, and your dose is increased by 25 mcg, and then you re-retest in six weeks, and you continue like that until your TSH is under one, and all your symptoms are gone.

When you start on such a low dose, the TSH often does rise like that. Nothing to worry about.

[Saz88 in reply to greygoose]

Thanks so much for this, was concerned it meant there was a different cause or something 😊

[greygoose in reply to Saz88]

No, shouldn't think so!

[silverfox7]

Keep posting your results and ranges and we shall help you with connents. Doctors sometimes think if you are in range then you are fine! Its where I. The range that is impotrtant. Increases should be done every 6 weeks and increases in 25 mcg.

[Saz88 in reply to silverfox7]

Thanks for this, such a great resource and so great of you all to assist 👍🏻

[Phoenix605]

I had the same reaction, about 10 days after starting it felt like the sun coming up and I realised just how bad I had been feeling. Unfortunately it didnt last.

When I had my second bloods done and they called me to ask if I had actually been taking the levo as my TSH had gone up and FT4 down I pointed out it was far to soon for me to get sloppy, cheeky mare!!

The way I had it explained on here was that the pituitary had been flogging the thyroid for more hormone for so long that when it detected more hormone it started shouting even louder so it wouldnt stop. My thyroid hormone levels also dropped slightly and the analogy there was the thyroid had been flogged for more hormone for so long that it had a bit of a holiday in relief as something else came along and took up the slack.

[Saz88 in reply to Phoenix605]

Phoenix 605 this is great , thanks for taking the time to reply- am a bit concerned they may think I haven't taken it properly as you say!

However positives are that we can feel better, just frustrating this may take another few medicine alterations to maintain it! Guess that as 50 a more common starter dose this may last longer if hopefully they suggest upping it to this when I speak to the Dr .

[Phoenix605 in reply to Saz88]

I have a reasonable GP but I still go armed. Book GP appts for a week after blood draw so you have time to post for advice, that way you will be confident that you are being treated correctly or need to push for another raise. We can advise how GP may react to levels and what to say to counter. Never accept , normal, ok, fine - the lab calls anything in range 'normal no action' and receptionists say thr GO will contact you if any issues. GP will assume you feel well if your results are in range somewhere and you dont contact to say different. If I had accepted this I would still be on 50 not 150. That initial burst of improvement just proved to me I could feel well again if I got the right dose.

Read, a lot, posts highlight the common issues that prople face, there is lots if info on main TUK site and Stop the Thyroid Madness (STTM) are one of the less biased sites. Isabella Wentz is also considered a good source of info especially for Hashi.

Be specific, Im tired all the time gets brushed aside, I used to need 8 hours sleep but now wake up tired even after 10, i used to enjoy 5 mile walks with the dog but I'm now exhausted after 2 and need a nap ot whatever fits.

Use a symptom checklist and score it for improvement or not, again shows you are being specific, if you just say still rubbish after each dose raise they have been know to say well more isnt working do no point raising. Saying well this is much better on the new dose and those are a little better encourages them to persevere AND justifies you asking to keep going. Having the scored lists against dose is also useful if you get dropped so you can show specific symptoms have returned to their old levels.

Hopefully you have a good GP who listens and you wont need to work too hard but GPs leave and you may have to prove your dose level benefits to a new one who wants to cut you down. Dont stick with a bad GP, it took me 4 to find a decent one.