Hi I’ve recently been diagnosed with hypo thyroid I also have PBC, this is linked.
I had my thyroid checked 4 months ago and tsh was 4.8. I was given Levothyroxine 50mg instead of 25mg.
Last month I had bloods checked again and Tsh is now at 17.18. (Range is 0.55-4.78) Free T4 is 14 (range 10-25).
I have been asked to repeat bloods every month for 3 months then I’ll see my Liver consultant.
I just think this is a huge jump, should I be worried or just wait for the 3 comparisons to be checked.
50mcg Levo is the normal starting dose unless the patient is elderly or has heart problems. Retesting should take place 6 weeks after starting Levo, increase dose by 25mcg, then regular testing/increasing every 6-8 weeks until levels are where they need to be for you to feel well.
There is a big difference in your TSH level onside ring you have been on 50mcg Levo. Two. Things come to mind - a false result due to an error in the testing procedure (do you take Biotin or a B Complex containing Biotin) or the possibility of autoimmune thyroid disease. If thyroid antibodies haven't already been checked I'd ask for Thyroid Peroxidase and Thyroglobulin antibodies to be tested.
I don't know what PBC is but if you are taking any medication for this are you taking it at least 2 hours away from Levo and have you checked for any interactions between Levo and any medication you are taking?
Thanks SeasideSusie, my initial dose of Levothyroxine was 50mg after 3 months they dropped the dose to 25mg. But only after the latest bloods did they increase it back to 50mg. My other medication is taken in mornings. I take Levothyroxine at night just before bed.
My hospital consult prescribed my other medication for chronic liver disease so there’s no conflict with meds.
I’m not on any biotin or b complex meds.
I just didn’t like the huge difference in the number, I’m scared tbh. I think I’ll make an appointment with my gp sooner, to give me some insight as this is all double Dutch to me.
Who said getting old was easy.
Jane xx
As you are recently diagnosed your thyroid is in the process of failing. As such it will gradually decline and your levothyroxine requirement increase. As a result of the last blood test your levothyroxine should have been increased to 75 mcg or better still 100 mcg.
"My hospital consult prescribed my other medication for chronic liver disease so there’s no conflict with meds." - I'm sure you are right, but you can't assume that they always check for contraindications or understand the nuances of meds for different specialties - I'm seeing my Neurologist on Saturday because my Endo wants him to change the meds he gave me which impact my thyroid dysfunction, for instance.
PBC is believed to be an autoimmune condition, and with one, you are more likely to have a second or more. Therefore as SeasideSusie suggests, if you haven't already been tested for autoimmune thyroid disease aka Hashimoto's, you should ask your GP to do this, as it can affect the pattern of your thyroid disorder, and therefore your thyroid hormone levels. Also, I believe PBC can affect absorption of food which means it can affect absorption of meds taken orally, and also your nutrition; which in turn affects your thyroid and general health. So testing for Vit D, Vit B12, folate, ferritin is also important.
Maisiegray thank you, I’ve looked into my PBC but still I’m learning more daily. I honestly don’t know very much about my thyroid. So everyday is a school day for me. I will be asking those questions at consultants visit too. Jane xx
Reallyfedup123 I’m going to call my consultant as I’m becoming more worried after reading a few replies. At least they can hopefully put my mind at rest. Always sound advise on her which I appreciate. I hope you are well xx Jane
Be advised the civilians here who are giving expert advice based on their own long years of experience, will have more deep, practical familiarity with thyroid than a gp, consultant, endocrinologist.
The professionals can’t know everything because they have to know so much about so many other bodily systems. This results in thyroid knowledge that’s millimeters deep, and then they have to fall back to the well-worn trope of putting you off.
But as a minimum, without testing FT3 no one knows if the OP has a conversion problem or not. Given her other condition she may have, but the liver isn't the only locus of conversion; and she equally may have an absorption problem as a direct consequence of her other condition - or both. But at the moment her FT4 is only 26% in range and you can't make a decision about conversion based on that sort of low level; so as Jim suggests, she may - at this point - need an increase in Levo before other decisions are made.
Thank you, this really is all foreign to me. I have some reading to do I think. X
Yes her FT4 is low, but she's in the process of optimising her Levothyroxine so it's hardly surprising. She's nowhere near having reached a point, if she ever does, where she is taking a high Levo dose and has a high FT4, but her FT3 is disproportionately low. A med shouldn't be prescribed "just in case" it might be needed - many diagnosed hypothyroid never need T3. So the first thing to do is surely test her FT3 level and not assume what it might be - otherwise that's no better than any GP who doesn't test FT3 but assumes it's okay because TSH and/or FT4 are okay. Her FT3 may be absolutely flat lining but no one knows at present. It doesn't take 6 weeks for Levo to take effect; it takes c6 weeks for it to reach a steady state, which isn't the same thing; but in any case, the OP hasn't said she is "suffering" - her purpose in posting here was to express concern about the huge jump in her TSH level. Even Paul Robinson, such a proponent of T3, believes it to be a last resort, not a first.
Jane, Much of this discussion is getting too deep and way off the essential points. You are in the early stages of treatment and it's quite usual for the decline of the thyroid to run ahead of treatment. Many endocrinologists will now start patients under the age of 60 on 100 mcg levothyroxine in order to speed up recovery, others perfer a cautious approach of 25 mcg increments. The evidence is that it makes little difference, so it's OK to go with either strategy. In your case your TSH shows you need an increase in your levothyroxine dose. The general consensus is that patients treated with levothyroxine will need an fT4 around the upper quartile to feel well, that would be an fT4 of about 20 to 24 in your case, but we are all different.
I know nothing about PBC, I do know that many liver problems improve when hypothyroidism is treated.
The liver plays a minor role in converting T4 to T3. Many years ago it was thought to be the major source of T4 to T3 conversion, this is now known not to be so. (sorry for the technical stuff I'm about to write). The liver expresses type-1 deiodinase (D1), this enzyme converts T4 into equimolar amounts of T3 and reverse T3. D1 activity increases when thyroid hormone levels are high, it's a means of conserving iodine and mitigating the effects of thyrotoxicosis - too much hormone. So, if PBC is having any effect on your ability to convert T4 it would be beneficial from a hypothyroid patient's point of view, it would reduce the D1 activity and the consequent rise in TSH would promote D2 activity which converts T4 to T3 in organs such as the brain.
Don't worry about all these detailed possibilities. Most patients with primary hypothyroidism (a failing thyroid) do well when their levothyroxine dose has been titrated appropriately. Your dose is currently too low and needs adjustment such that your fT4 increases and your TSH comes down somewhere below about 2.0.
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