Should I be asking for a medication increase? - Thyroid UK

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Should I be asking for a medication increase?

XxAnyaxX profile image
22 Replies

Hi all,

So i have Hashimoto’s, was diagnosed at the start of the year. I am currently on 50mcg of levothyroxine, however i still have issues such as joint pain, fatigue and freezing cold hands that turn blue/white and skin rashes. Also heavy hair loss so now embracing wig life 😅😋Now I don’t want to attribute every little bump or bruise, to my thyroid condition. However surely I should feel better on medication? Should I ask for an increase in my levothyroxine? I was thinking my body might not be great at converting t4 to t3 as my t3 is maybe a tad low🤷‍♀️ Also my doctor ran an ANA panel? and it was positive, not sure if that’s related to thyroid issues or not.

Any help appreciated thanks 😊

Here are my ranges:

TSH 2.5 (0.35-5)

T4 10 (9-21)

T3 1.2 (3.1-6.8)

B12 800 (200-883)

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XxAnyaxX
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22 Replies
SlowDragon profile image
SlowDragonAdministrator

You’re very under medicated

50mcg is only a starter dose

See/contact GP for 25mcg dose increase in Levothyroxine

Blood should be retested 6-8 weeks after any dose change or brand change in Levothyroxine

ESSENTIAL to regularly retest iron/ferritin, folate, ferritin and B12

Low iron or ferritin strongly linked to hair loss

SlowDragon profile image
SlowDragonAdministrator

Was test done as early as possible in morning before eating or drinking anything apart from water and last dose Levothyroxine 24 hours before test?

When adequately treated Ft4 should be in top 1/4 of range - around 18-20

50mcg is only a STARTER dose

Dose levothyroxine should be increased slowly upwards in 25mcg steps until on, or near full replacement dose

guidelines on dose levothyroxine by weight

Even if we frequently 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 or near 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.

Also here

cks.nice.org.uk/topics/hypo...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Likely to have very low vitamin levels having been left under medicated for so long

ESSENTIAL to test vitamin D, folate, ferritin and B12

Have you had thyroid antibodies tested?

Request/insist GP test vitamin levels and thyroid antibodies

XxAnyaxX profile image
XxAnyaxX in reply to SlowDragon

Thank you for the reply, thanks for all the info. On my last blood test my ferritin was in normal range (according to my doctor) However I did have a b12 deficiency but I supplemented with 10,000 mcg sublingually. Now my b12 is 800 so it came up quite nicely. Oh and yes I tested high for both tpo and tgab antibodies.

SlowDragon profile image
SlowDragonAdministrator in reply to XxAnyaxX

What was actual ferritin result?

Always get actual results

SlowDragon profile image
SlowDragonAdministrator in reply to XxAnyaxX

Previous results from 2 years ago

Vitamin D deficient <30

My folate: 9.68 nmol\L ranges: 8.83-60.8

Ferritin: 48.6 ug/L ranges: 13_150

B12 Active: 49.0 pmol/L ranges >37.5

(Any more recent results?)

Ferritin is low

XxAnyaxX profile image
XxAnyaxX in reply to SlowDragon

Ferritin 27 (15-200)Folate 9.2 (3.1-20)

Vitamin b12 800 (200-883)

Vitamin d I’m not sure but I have been taking a spray vit d supplement

Might need an iron supplement now that I’m having a proper look🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply to XxAnyaxX

Ferritin below 30 is deficient

GP should be doing full iron panel test

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

No vitamin D results?

SlowDragon profile image
SlowDragonAdministrator in reply to XxAnyaxX

Recommend reading many posts and replies by humanbean on iron and ferritin

Eg

healthunlocked.com/thyroidu...

Is that T3 result correct?? 1.2?

XxAnyaxX profile image
XxAnyaxX in reply to

I think so yes, it was the number i saw when my doctor brought up my blood results on screen, to discuss them.

in reply to XxAnyaxX

Gosh. No wonder you feel awful! I can barely function with T3 low in range; let alone well below range.

I'd be on the phone in the morning for an increase in levo.

XxAnyaxX profile image
XxAnyaxX in reply to

Thanks for the reply, yes it is a little low. I will definitely talk to my gp about a medication increase.

in reply to XxAnyaxX

It's more than a little low!!

Once on hormone replacement most people feel best when T4&3 are in the top third of the range.

XxAnyaxX profile image
XxAnyaxX in reply to

Yeah you’re right, it is pretty low. However I’m not sure if my doctor thinks there’s something else going on, because of the Ana positive antibodies. So I’m not sure if my thyroid is 100% to blame for me feeling lousy. However I will definitely get on to my doctor about a dose increase.

TSH110 profile image
TSH110 in reply to XxAnyaxX

Those levels would make anyone feel lousy! They need addressing immediately. If there’s another problem that can be dealt with separately.

XxAnyaxX profile image
XxAnyaxX in reply to TSH110

Thanks for the reply, yeah it is pretty low, I think that’s probably why I’m feeling rough.

TSH110 profile image
TSH110 in reply to XxAnyaxX

Sure to be! Hope you get a dose increase ASAP. Ideally TSH between 0.2 and 0.5 and free T3 and free t4 in the top third of their ranges and that’s according to DrToft the eminent endocrinologist. Thyroid U.K. admin have a copy of his reply qn 6 in Pulse magazine where he states this. You could get a copy to show your GP, he might learn something! Toft is surgeon to the Queen when she’s in Scotland so highly regarded.

XxAnyaxX profile image
XxAnyaxX in reply to TSH110

Great! Thanks for the info, I’ll be sure to check it out. Yes got a phone consultation however it’s not for a week yet, I will just ride it out till I can speak to my gp🤷🏼‍♀️

JAmanda profile image
JAmanda

Eek have you seen your t4 and T3 levels..? Yes you need an increase. And likely another and another if they give you25mcg each time. I’d be stressing your symptoms and asking for a decent increase perhaps at 1.6mcg x you body weight in kilos as per NICE guidelines. You must be poorly with those levels.

XxAnyaxX profile image
XxAnyaxX in reply to JAmanda

Thanks for the reply, yeah they are quite low, I’ll definitely get onto my gp about a dosage increase. Yeah I feel fairly rough, i guess it must be because of my low thyroid hormones.

Helsan profile image
Helsan

As everyone has said your thyroid results are appalling don’t be diverted by something else. Your Gp is not thyroid educated once on meds most feel best with TSH of 1 or below and T3 and T4 well into top quarter of range. You are seriously under medicated. I had T3 of 1.3 and high T4 I have a conversion issue. You may be fine if only you had enough T4 to convert. You need a different Gp or educate this one.

XxAnyaxX profile image
XxAnyaxX in reply to Helsan

Yeah they are not great, i don’t know why my gp didn’t mention that my t4 and t3 were very low, she looked over the results with me🤷‍♀️ In hindsight I should have questioned the numbers😐 oh right I thought I had a conversion issue, but you might be right in that I don’t have enough t4 to convert anyway😅 definitely be getting onto my gp about a dose increase.

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