Advice needed on dose: Hi everyone! I’m new to... - Thyroid UK

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Advice needed on dose

Glutenfreemonkey profile image

Hi everyone! I’m new to the community and I’m really impressed by the support here. I’m looking for some guidance on adjusting my dosage.Here are my lab results from this week:

- TSH: 2.4 (0.4 - 4)

- FT4: 15.8 (12 - 22)

- FT3: 4.5 (2.5 - 6)

I’m currently taking 37.5 mcg of levothyroxine, but I’ve been struggling with symptoms like fatigue and hair loss which is driving me insane. I’ve had to take several days off work because I’ve been unable to function properly. My GP is not open to increasing the dose, and I’m feeling stuck, as the current situation is difficult to manage.

Has anyone else had a similar experience, and how did you handle adjusting your dosage? I’m looking for some advice on how to approach this.

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Glutenfreemonkey profile image
Glutenfreemonkey
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16 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum

Standard started dose is 50mcg. 25mcg if with health issues or older. Seems you are on quite a low dose. Were you ever on higher and reduced?

Do you have another doctor at practice you can see. Suggest a trial increase to see if symptoms improve.

Have you tested key nutrients ? Folate , ferritin , B12 and vitamin D?

Glutenfreemonkey profile image
Glutenfreemonkey in reply toPurpleNails

Hi PurpleNails, thanks for your reply. I was diagnosed 3 months back so no, I was never on a higher dose. Started at 25mcg and bought it up to 37.5 mcg. No other health issues and tested for all nutrients except folate, which are again optimal as I have been supplementing for over 8 months.

SlowDragon profile image
SlowDragonAdministrator in reply toGlutenfreemonkey

tested for all nutrients except folate, which are again optimal as I have been supplementing for over 8 months.

Please add actual results and ranges

Exactly what vitamin supplements are you taking

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

Glutenfreemonkey profile image
Glutenfreemonkey in reply toSlowDragon

Hi Slowdragon, Roger that. I will add the results to my profile. I didnt stop B complex as I wasn't aware previously until I struck upon this forum. I will keep that in mind for the next one. Vit B12 was 'high' - 723 pmol/l.

SlowDragon profile image
SlowDragonAdministrator

Free T4 (fT4) 15.8 pmol/L (12 - 22) 

Ft4 only 38.0% through range

Free T3 (fT3) 4.5 pmol/L (2.5 - 6) 

Ft3 better at 57.1%

You’re in need of next increase to 50mcg daily

Retest in 6-8 weeks

Likely to need further increases over coming months

When adequately treated most people will have Ft4 at least 60-70% through range

ALWAYS test thyroid levels early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

How old are you

How much do you weigh in kilo

Can you see different GP

Request/politely insist on testing of Full iron panel including ferritin for hair loss

And testing vitamin D, folate and B12

Glutenfreemonkey profile image
Glutenfreemonkey in reply toSlowDragon

Hi Slowdragon, thank you for that. It makes sense.

-32 years

-62 kg

-I am currently on a waiting list and it looks like the average wait time is about 3 months before I can see anyone.

Made a note of all the points which I will be bringing up to my current GP.

SlowDragon profile image
SlowDragonAdministrator in reply toGlutenfreemonkey

-I am currently on a waiting list and it looks like the average wait time is about 3 months before I can see anyone.

Is this to see an endocrinologist?

GP can and should increase your dose of levothyroxine

You aren’t even on standard starter dose yet

62kg x 1.6mcg = 99mcg

Eventually likely to be on something between 75mcg and 100mcg daily

SlowDragon profile image
SlowDragonAdministrator

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should always be below 2 on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

SlowDragon profile image
SlowDragonAdministrator

Looking at your forum name……..presumably your hypothyroidism is autoimmune ?

Glutenfreemonkey profile image
Glutenfreemonkey in reply toSlowDragon

Yes that's correct. I was diagnosed with Hashimotos

Sleepman profile image
Sleepman

Have they done TPO antibdy blood test? That is test for AI type that NHS does once.

Glutenfreemonkey profile image
Glutenfreemonkey in reply toSleepman

Hi Sleepman, yes TPO is at 400 IU/ml

tattybogle profile image
tattybogle

have a look through these two , hopefully you can use them to persuade GP that a trial dose increase to see if it improves symptoms, will do no harm :

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish

crimple profile image
crimple

Glutenfreemonkey Suspect your GP is just looking at numbers and thinking everything is within the ranges! Not good enough. Should be listening to your symptoms. On here we normally see TSH below 2 and often below 1 for folks to feel well.

TSH is NOT a thyroid hormone but that's what most medics seem to fixate on. TSH is the message from your pituitary to tell your thyroid to produce more hormones. T4 is a storage hormone and your body converts it to T3 the active hormone which should reach every cell of your body.

Quite a lot of us on here are poor convertors of T4 to T3 and often have to have some T3 added totheir levothyroxine. To check % through range of your T3 and T4 go to thyroid.dopiaza.org

Glutenfreemonkey profile image
Glutenfreemonkey in reply tocrimple

Hi Crimple, that's correct. He is only looking at TSH and sent me a report yesterday rejecting my suggestion of dose increase as TSH is normal. I'm now on a wait list to see someone else.

crimple profile image
crimple

Glutenfreemonkey I do hope the “ someone else” is more knowledgeable or at least not so fixated on TSH. Good luck and let us know how you get on.

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