Endocrinologist not raising sister’s dose above 25mcg?!

[liaratsoni]

Hi everyone,

I posted before about my sister - she is symptomatic of thyroid disease mirroring me exactly with symptoms 2/3 years before I got diagnosed: tiredness, palpitations, mood changes, erratic periods, coldness digestion issues etc. Blood tests before we saw the endo showed deficiencies in ferritin, vitamin d and folate (and for some reason I’ve now seen he did not test b12) so all the normal ones you expect to be low. Thyroid bloods showed T4 13 (12-22) and T3 4.9 (3.5-6.5) and a normal TSH of 1.9 which is the same TSH as mine at diagnosis. There is a strong history of thyroid disease - I have it and all but one of the female members on my dads side had/have thyroid disease. Neither I nor my sister have either antibodies.

The endo we saw is my own and with me he’s been amazing - I’m also unsure how many other endos would recognise the strange presentation we have. But she’s been on 25mcg for 6 weeks and - I would say obviously on such a small dose - doesn’t feel any better. She had another consultation today and can’t remember her thyroid bloods but said her folate and ferritin are deficient still and her ferritin isn’t even back in the 15-250 range after almost 2 months of supplements. This would suggest to me she’s definitely not optimal but he’s saying he’s keeping her on 25mcg for 2 months and if she’s not better to have a discussion with him - he says she doesn’t need more blood tests. this is an issue as she’s off work and the doctors are already getting funny about sick notes but she’s so tired with even going around food shopping and she does shop work! I’m trying to get her thyroid results to see the numbers but surely 25mcg could not have effected the T4 that much to cause him to hold the dose when she was barely in range? Any ideas where we should go from here? Thank you!

[Nanaedake]

Without seeing actual blood test results for all these things it's impossible to say. Vitamins coukd well be low as a result of another autoimmune disease rather than thyroid disease. So, you can't make assumptions based on low vitamin levels.

Thyroid tests don't necessarily indicate thyroid disease. FT4 is low but there could be confounding factors if vitamins are low. TSH is normal and it wouldn't be usual to diagnose thyroid disease with that combination of results. Perhaps Endo wants to rule out all possibilities, which is sensible.

[liaratsoni in reply to Nanaedake]

Thank you! I am hoping to get them in the next few days. Its very strange as I have secondary and was diagnosed with a normal tsh and low t4/t3 and she had full pituitary profile like me and was all fine like me too. All incidences in the family have been thyroid disease for 3 generations and no other autoimmune conditions have presented so it just seems to much of a coincidence as shes the exact age I was when I started becoming quite ill and mirrors my symptoms exactly.

[greygoose]

I would be asking him to consider Central hypo.

[liaratsoni in reply to greygoose]

I was hoping he would be thinking along those lines as he has diagnosed me with secondary and I presented with the same symptoms at the same age as her and when I was diagnosed 3 years later had the same TSH and T4 - the only difference is I also had below range T3 and was significantly more unwell - she is basically where I was at the same age I just got diagnosed much later because doctors never went past the TSH and I had no idea about thyroid disease so I definitely don't want her to go down the same route!

[greygoose in reply to liaratsoni]

Well, if she does have Central hypo, the eventually, her FT3 will drop, too. So, she might have to wait for a diagnosis the same as you did. But it's crazy that the same endo that diagnosed you, doesn't see the same trend in her!

[liaratsoni in reply to greygoose]

That's what I was thinking - I am very confused too! Hopefully he will monitor her - if not I will make sure we do but definitely frustrating as she's symptomatic!

[greygoose in reply to liaratsoni]

Yes, but they don't understand symptoms. They don't know what they are.

[SlowDragon Administrator]

Even without central hypothyroidism being distinct possibility....dose levothyroxine always needs increasing ....Levo doesn’t “top up” your thyroid levels, it replaces it

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Obviously all four vitamins need improving to optimal levels too

What vitamin supplements is she taking

[liaratsoni in reply to SlowDragon]

Thank you this is what I was thinking that surely now shes started its going to suppress her thyroid so increase would be needed anyway! She is currently taking ferritin, vit d and folate and I am trying to get her b12 tested too. I am also making sure shes taking them at the correct times/away from thyroid hormone etc!

[Nanaedake]

Good point from Greygoose to exclude central hypothyroidism.