Confused about starting dose of Levothyroxine. - Thyroid UK

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Confused about starting dose of Levothyroxine.

DisCBR profile image
18 Replies

Hi, this is my first time posting. I was diagnosed with subclinical Hashimotos in 2019. I decided at the time to manage without any medication. I’m now in perimenopause which is having an effect on my thyroid symptoms. For the last month I’ve been feeling very cold, exhausted, aching joints all over my body, weight gain. I have so much water retention in my legs that I have swelling behind the knees that is putting pressure on my nerves so I’m having constant burning pins and needles and some nerve pain. I’ve decided to give Levothyroxine a trial. I have been prescribed 25mcg. However when I went to the out of hours GP last night he said that was too low and it wouldn’t do anything. He gave me 50mcg and said I might go a bit hyper! So I’m confused now as what to do. I haven’t started anything yet. Any advice would be greatly appreciated. Thank you.

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tattybogle profile image
tattybogle

you may find reading the replies to this post helpful : healthunlocked.com/thyroidu...

50mcg is the right place to start for many people .

GP is correct , 25mcg can be too little for many , but some do need to start very slowly.( eg. if elderly , or have heart problems , or have been hypo for many years but left untreated).

but it is very individual , and the only way to know is to try it and see.

DisCBR profile image
DisCBR in reply to tattybogle

Thank you

Sparklingsunshine profile image
Sparklingsunshine in reply to DisCBR

I think its unlikely 50mcg will you make you hyper, or actually, accurately, the term is over medicated. Unless you are extremely petite most adults usually end up on 100mcg or more. I took 200mcg and never felt in anyway overmedicated and I'm not a large person. Usual scaremongering tactics.

DisCBR profile image
DisCBR in reply to Sparklingsunshine

I’m currently 10 stone so I’ve gained a stone as my normal weight is around 9 stone. It surprised me when the doctor said it might make me hyper but that’s ok!

Sparklingsunshine profile image
Sparklingsunshine in reply to DisCBR

Medics dont differentiate between truly hyper, which is an autoimmune disorder and being overmedicated. They are not the same and its misleading espsecially if you are new to the world of thyroid 😆.

If you are hypo you cant suddenly become hyper, it doesnt work that way. You can take too much thyroid replacement as its all about fine tuning the right dose for you. But that is extremely unlikely on 50mcg.

DisCBR profile image
DisCBR in reply to Sparklingsunshine

All I want is to feel better. I’m worried I won’t be able to work soon as the swelling from the water retention and joint pain is unbearable.

Sparklingsunshine profile image
Sparklingsunshine in reply to DisCBR

Yes both common hypo symptoms, unfortunately. There is no quick fix with thyroid disorders, they rarely happen overnight and the treatment and getting on your optimal dose can take time and patience, which isnt helpful, when you feel so unwell.

But increasing the dose too quickly can make you feel pants as well. I think we can all sympathise as we've all been there. Hopefully the increased dose might help, but you are likely to need further dose increases in the next few months.

You will need to get tested again in 6-8 weeks after a dose increase. Always take your last dose of Levo 24 hours before your blood test,try and get a blood test no later than 9am. Only drink water until after the test, no tea, coffee, food or other meds. These steps will ensure your TSH is at its highest level. Very useful when trying to get dose increase or avoid dose decrease.

Also avoid any vitamins that have biotin in them, a common ingredient. Biotin is used when testing thyroid bloods and ingesting this before the test can skew your results. We recommend staying off biotin for 5-7 days before a test.

Do you have the NHS app or online access at your GP? You are legally allowed access to your blood tests results, and what GP's think is an OK result and what patients who have to suffer this condition actually know, is that the two rarely agree.

Please post your results for comment. We have a huge wealth of combined knowledge on here. Many of our posters and admins are extremely knowledgeable about this stuff.

DisCBR profile image
DisCBR in reply to Sparklingsunshine

My recent lab results were taken on the 4th of April

TSH 7.88 mlU/L (0.2-4.2)

FT4 12.4 pmol/L (12-22)

FT3 3.9 pmol/L (3.1-6.8)

I recently went on a medication to shrink fibroids which contained oral estrogen and progesterone which I feel has had an impact on my thyroid levels because of the increase in TBG. I’m going to test again to see if anything has changed as I’m feeling so unwell.

I’ve come off it now to see if I feel better. I asked my GP if I could be tested as 8 weeks instead of 12 and she said it would not be enough time. I also asked if I was still symptomatic but my TSH was normal would they increase my dose and she said no. I also mentioned that I work so can’t get the blood done until the afternoon so asked if they would accept a private blood test which I can do in the morning in work and she said the afternoon results are reliable so there is no need. It’s all so frustrating.

Sparklingsunshine profile image
Sparklingsunshine in reply to DisCBR

Monitor My Health is an NHS hospital in Exeter. It has the same ranges, equipment and testing protocols as any other NHS lab. Try suggesting she accepts private tests from them. GP's are shockingly ignorant about everything to do with thyroid. They dont understand time of day and food/ drink can make a big difference to TSH levels.

DisCBR profile image
DisCBR in reply to Sparklingsunshine

Thanks I’ll do that.

helvella profile image
helvellaAdministratorThyroid UK in reply to Sparklingsunshine

Unfortunately that is not quite the case.

NHS labs have various ranges (reference intervals). Sometimes one single lab uses two different ranges because they use two analysers which end up being slightly differently calibrated.

There is a range of analyser equipment used and it is not consistent across labs. (Sometimes this has been a positively good thing. A sample which produces an off result can be re-tested at a different lab which uses a different analyser to try to identify whether it was caused by test interference.)

Lottyplum profile image
Lottyplum in reply to DisCBR

GPs often talk codswallop when dealing with thyroid problems as they generally know diddlysquat! Their ignorance knows no bounds! This forum is the best place to grow your knowledge in order to get well. I think we can all agree to that statement. For me, after years on Levo monotherapy+never had T3 tested by any GP +new surgery fixation on TSH levels had me in hospital due to their reducing my Levo far too low! From what I learned here I got an appt with private Endo ( from Thyroid UK list), am on T4/T3 combo and finally have my life back!

DisCBR profile image
DisCBR in reply to Lottyplum

Where do I find the private endocrinologist list please ? I’ve been thinking of seeing a specialist instead of relying on GP.

TiggerMe profile image
TiggerMe in reply to DisCBR

thyroiduk.org/contact-us/ge...

Lottyplum profile image
Lottyplum in reply to DisCBR

TiggerMe sent you the link. When I had looked through the list I received I asked for recommendations from our lovely +supportive community as I'm in the north of England. I received a private message from another member who saw a private only Endo who you can either see by going to his clinic, by zoom or by phone. I checked his profile, what his experience was and decided this was the man for me . I needed a referral letter from my GP but that was no problem. So, once you get the list you can have a good look and ask for comments regarding specific Endos. There are Endos who do both NHS and private consultations or, like mine, private only. I hope this info helps you take your next step.

DisCBR profile image
DisCBR in reply to Lottyplum

Thank you, that is very helpful.

Forestgarden profile image
Forestgarden

25mcg is a low dose but start there and try it today. You might like to stay on 25mcg for a week, or just a day or two. If you feel fine, up it to 50mcg then stay on that dose for 6 weeks or so, see how you feel and get your bloods done. Its quite likely your dose will then need to be adjusted. Its very important to take your levothyroxine on an empty stomach with just water, and have no food or drink for 30 mins (preferably an hour) after.

DisCBR profile image
DisCBR in reply to Forestgarden

That’s a good idea, thank you.

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