Diagnosed 6 months and still on starter dose

Hi

Sorry to post again but i've just had the endo's recommendation to stay on the starter dose of 25mg Levo.

I was diagnosed Hashimotos in the summer with sky high antibodies but didn't get medicated until October.

Back then my TSH was 4.3 and FT4 was 13.57. My B12 was 301 and vit d was 88.

6 months ago my iron was really low at 10, but was up to 46 after supplements. I'm taking all the supplements advised by helpful posters on this group.

I'm still feeling like I'm running at half speed to the point I go to bed in the afternoon when I'm not at work. I suffer brain fog, fatigue, a feeling of being jet lagged, constipation and have numbness and pins and needles. The days of doing 30 mile bike rides seem like a distant memory. I'm shattered if I try to do a steady 5 miles!

My new results from early December were fasting and taken at 11.30am. I took my Levo 24 hours before this blood test. The previous results were taken at 9am.

My new results are much improved:

TSH 1.7 range is 0.35 to 4.5

FT4 17.5 range is 11 to 26

FT3 3.9 range is 3.1 to 6.8

This is the first time FT3 has been tested so I don't have anything to compare it with.

Because of xmas, its taken a month to get his advice on these results. I was so frustrated waiting that I increased the dose to 50mg but i'll have to drop it now as I'm about to run out!

I take vit c with 25mg gentle iron, selenium, k2mk7 with vitD. I also started taking magnesium recently. I take B12 and B complex and eat GF. I'm trying to get these ranges all optimum.

I'm paying to go private as I'm struggling to function and I can't give up work. But i'm not as productive as I should be.

Do you think I should just go back to 25mg and see what happens at the next appointment. As I've been under chronic stress for 2 years, he agreed to testing my adrenals if I wanted. Does anyone have any experience of adrenals being the problem rather than thyroid?

11 Replies

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  • Greentrees1,

    Do you feel any better for taking 50mcg?

  • I only increased it 8 days ago and I've also gone down with a sinus infection and been really unwell, so it's hard to tell until that's cleared. I don't think I'll be able to get enough medication to give it a proper go. How long should it take to feel a difference? I think my pins and needles has improved but that's from the B12 I've been supplementing following advice on here.

  • Greentrees1,

    8 days probably isn't long enough. TSH would have been higher if you'd had an earlier blood test. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your endo. If you can't persuade endo to increase dose then consider buying Levothyroxine on line to increase to 50mcg.

  • No, I don't think you should go back to 25mcg. Your doctor is another who is not knowledgeable about treating suffering thyroid patients.

    50mcg is a starting dose with 25mcg increments around every six weeks until you feel well. For most that means a TSH of around 1 but some need it suppressed and your FT3 is very low and FT4 low when both should be towards the upper part of the range.

    Your Endo may be another one who sticks to the rules that TSH is king and never mind what the other results are.

    You need more thyroid hormones.

    One doctor, now deceased, who fought the BTA to be sensible and failed said that nowadays the patients' doses are far too low and used to be between 200 and 400 mcg of NDT. Now they ignore our symptoms in favour of the TSH which is very wrong. You are suffering and trying to earn a living.

    hormonerestoration.com/

    web.archive.org/web/2010103...

  • Thanks. I'm going to contact him and ask if he'll support me trialling a higher dose. It seems ridiculous to carry on with something that isn't working. At the start of the year, work gets pretty tough so I need to be fit to step up!

  • This is another link which will surprise you, I'm sure, from TUK for diagnosing. I think the Endocrinology should have more expertise on how to make patients well. Not prescribe something else for a symptom but optimum hormones for patients to eradicate all symptoms.

    thyroiduk.org.uk/tuk/testin...

  • Thanks for that. Yes it would be helpful if they took more notice of symptoms rather than (mis)diagnosing by 'normal range'. I wonder if I could get my RT3 tested. I'm also thinking of the genetic test done. I can't stand the thought of spending years before my quality of life improves.

  • Greentrees1,

    It's highly unlikely you will have high rT3 on 25mcg Levothyroxine. rT3 isn't usually tested on NHS so you would need to pay for a phlebotomist and private blood test to get rT3 tested.

  • Ok thanks. I didn't realise that. I'm on a mission now to get my mum checked out as she has lots of symptoms. She has a goitre which was tested about 10 years ago but she doesn't know what her thyroid results were. I only found this out recently so I'll get on to her doctor. She hates going to the doctors so she puts up with this horrible lump in her throat.

    I've read on TUK that Hashimotos is often genetic.

  • It's good that you got a FT3 result but you should be at the very least 50% in the range so that would mean 5 so very low on T3 and your FT4 under half as well though not quite as bad. If you were to take move Levo then you would also have more T4 to convert to the Active T3 that all our cells need

  • I'm actually quite glad now that it took so long to get feedback from the endo over Xmas as he's now agreed I can up my dose to 50mg as I've already done that while I was waiting! Thanks for all the advice. It feels like I've taken a step forward😊

    It was definitely worth messaging him with the request.

    Hopefully I can get my T3 nearer to 5...

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