Fluctuating TSH should I increase meds

Thank you to everyone who responded to my previous post, it was all really helpful.

I have had a blood test done with medichecks. My results are as followed.

Thyroid Function

TSH *

22.28 mIU/L 0.27 - 4.20

FREE THYROXINE 15.47 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 90.0 nmol/L 59.00 - 154.00

FREE T3 4.19 pmol/L 3.10 - 6.80

Thyroid Antibodies

THYROGLOBULIN ANTIBODY

*

576.300 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES

*

398.4 IU/mL 0.00 - 34.00

Levo 25mcg May2015, November 2016 50mcg reduced to 37.5mcg in February 2017 (I don't know what my levels were then) 2nd May due to exhaustion GP put me back on 50mcg and ordered blood test. TSH level was 35. I can now get through the working week but no energy to do much else and my house is becoming a tip and I've put so much weight on I'm teetering on a size 14.

My TSH as you can see above 4 weeks after my first blood test is 22.28 (should it be a quicker reduction?). I'm a little concerned about the fluctuation of my TSH and wonder if my levels will go down as quick as they went up and will they be up and down all the time (I would love to feel normal even just for a month) or should I see about getting my dose increased and wait and see what happens. I'm really not liking this having so much control of my life.

I would appreciate your comments. I haven't been told that I have Hashimo's disease but lab doctor mentioned it in her report. Thank in advance. Lynsey

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11 Replies

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  • I haven't a clue why your doctor is reducing your miserable 50mcg dose and then raising it again. We have to learn ourselves. 50mcg of T4 is a starting dose, with increments every 2 weeks of 25mcg until your TSH is 1 or lower. I doubt your doctor understands the very basics.

    You'll have to guide him I think otherwise you will not get sufficient levo to make you feel well and relief of your symptoms.

    You have an autoimmune Thyroid Disease called Hashimoto's due to having antibodies and going gluten-free can help reduce the attack on your gland. Hashi's is treated the same as hypothyroidism.

    GP should also test B12, Vit D, iron, ferritin and folate and remember that blood tests have to be at the earliest, fasting and allow a gap of 24 hours between your last dose of levo and the test and take afterwards.

  • Hi Shaws my GP has never diagnosed me with Hashimotos. I'm going back next week to bring it up. I've been a little too trusting of doctors knowledge and advice. Who would have thought that a small butterfly shaped thing could cause so many problems. I'm going to reclaim my life and get it back on track.

    I now have depression and anxiety on my record. I just wonder if it was down to my thyroid and I needed have taken Mirtazapine which I'm now tapering down very slowly.

    Thanks for your response. Lynsey

  • I don't think they bother much about antibodies as treatment is the same, i.e. levothyroxine.

    Thyroid hormones are needed from head to toe. T3 is the only active one, and brain and heart need sufficient for us to function, as well as the other T3 receptor cells in our body. So we need sufficient levo.

  • i.e. re 'depression' I suggest your doctor tests your FT3 it is probably low I should imagine. This is an extract:

    RESULTS:

    More females on T4 had high depression and anxiety scores than females not on T4

    ncbi.nlm.nih.gov/pubmed/197...

    Why are we being given the cheapest possible hormone replacement yet may develop other problems which needs more medications. It just doesn't make sense to me at all.

  • None of it is making sense to me and I think I grasp it then I find some new information (which is good to know). Let me see if I've got this right? Taking levothyroxin can cause depression? What are the alternatives? I never felt right for a couple of years before being diagnosed, I kept on getting diagnosed with depression and I remember back then my TSH was 4 and positive for antibodies yet I wasn't medicated until last year.

    In November I thought I was going crazy. I walked out of my job and only went back in April.

    I don't want this to turn into a rant so on a more positive note I had life coaching and I have made lots of positive changes and although I lack energy I do wake up in the morning in a good mood 😊

  • Re-read it as; "Having hypothryoidism and taking T4 (levo) only (which can result in low Free T3) makes women more likely to suffer from depression". Low T3 = depression.

  • Bendaisy2,

    Your GP needs to increase dose in 25mcg increments every 6 weeks until your TSH is between 1-2, ideally 1.0 or lower. Thyroid function should be tested 6-8 weeks after every dose adjustment.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. 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 GP.

    Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

  • Hi Clutter, thank you for your response. I've taken it all on board and I'm paying a visit to my GP next week. I'm going to get it right. Life is to short and I don't have time to be a sloth. Thanks again Lynsey

  • I would want an increase . My experience of raising on levo was , yes, there were fluctuations , but they got smaller as I went higher. But levo was no good for me , and I didn't find the doctors much cop either . ' I turned my back and left them standing there ' ( burning bridges - great song ) I use thyroid -s and do my own thing.

  • Hi JS33, thank you for your response. I'm very new to this and up until now I've never questioned my GP because he has all the knowledge. I'm going back next week to get it resolved and get my life back on track. Thanks again Lynsey

  • They do have a lot of knowledge , however , they have to know about a lot of things to a limited extent.

    Most on here would say , to be fair , GP's are tied to a system that limits what they can say , prescribe, try.

    They have to go by NHS best practice , which , may or may not be the best practice for everyone in the doctors office.

    It's you who has to live it.

    Best of luck.

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