Not sure where to start?

Hi. I have been hypothyroidism for around 10 years. I could never get above 25 micrograms without suffering from hypo symptoms. I've tried beta blockers but still couldn't tolerate levothroxine. I've never felt well and was diognosed with M.E about 7 years ago but have managed largely as a result of a healthy diet, exercise regime and low levels of stress... until after the birth of my little man who is now 21 months old.

The last 18 months have been so difficult. During pregnancy I managed to tolerate 100 mcgms of levothroxine but always felt slightly hyper. Then it became so unbearable I gradually reduced my dosage and eventually stopped taking them all together in January 2015. I felt tired and sluggish but managed, even whilst breastfeeding and through the constant sleep deprivation as my son has never and still doesn't sleep through the night.

August 2015 bloods were off the chart so I begrudgingly started on 25 micrograms again. The palps returned and my son, still bread fed, became jittery for a while but I persevered.

I have just started adding 10mcgms of liothyronine split into two doses as one dose was too much to my 25 micrograms of levothroxine. It seems like such a little dose but one week in and I'm struggling again. Still breast feeding and not sleeping. I'm close to coming off the meds completely again as I actually felt better than i do now as I still do not have any energy but have lots of side effects.

I'm addition to this I have chest pain, muscle pain, blurred vision, dry skin and quite a lot of hair loss since starting back on the meds.

My overall health is poor and I'm just not sure what else I can do. I do not know how to feel well anymore. I'm also pretty sure that my little man feels the effects of the changes as ive tried to go up so many times in the last 6 months. Really don't know what else I can do. I'm trying to self educate but am at a loss. Can anyone offer some advice, reassurance or opinion on what I could do?

7 Replies

  • Welcome to the forum, Vwyness.

    Can you post your recent thyroid results and ranges (figures in brackets after results) to help members advise?

  • Have you had TPO done to rule out Hashimotos? Would you consider getting specialist support? Would you consider NDT?

  • Hi. I've not had TPO, not sure what that is mind. I'm up for any support I can get lol and am very close to trying privately sourced NDT.

  • Could be you're very low in nutrients. Can you get your vit D, vit B12, folate and ferritin tested? These all need to be optimal for your body to be able to use the hormone you're giving it. Also, low nutrients will cause a lot of symptoms. And, it doesn't matter how good your diet is, if you can't absorb the nutrients then you're going to be deficient. :)

  • Hi, my blood results are as follows ( I have included everything on was given as I'm not sure what is or isn't relevant)

    September 2015

    Serem free T4 was 3

    TSH was over 100

    Full blood haemoglobin was 13.1

    Heamoglobn platelet 201

    Red blood cell count 4.84

    Haematocrit 0.44

    Mean cell volume 91

    Mean cell Heamoglobin level 27.1

    Mean cell haemoglobin concentration 29.8

    Nutrifill count 4.21

    Lymphocyte count 1.7

    Monocyte count 0.33

    Eosinophil count 0.11

    Basophil count 0.06

    January's bloods after taking 25 mcgs of levothroxine since September were :

    Serem free T4 10.6

    Serem free triiodithyronine was 4.7

    TSH was 13.3

    I have now included 10mcgms of liothyronine and am struggling woth dizzyness, nausea and palpitations after one week of this increased dose but not nearly as bad as when I go up to 50 mcgs of levothroxine.

  • It sounds to me as though you shouldn't be on Levo. Many Hashimotos patients can't tolerate it and are on T3 or NDT regimes, firstly because they are allergic to the fillers and secondly because they can't convert T4 to T3 (the useable element you need to feel better) and it backs up in their system making them suffer as you are doing now (and I did too, hence I'm on NDT). TPO measures the antibodies in your system which are attaching the thyroid tissue and this measurement gives you the diagnosis.

  • Thank you. I will ask to be tested for this as I hadn't as yet.

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