Advice please.: I was started on levothyroxine... - Thyroid UK

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Advice please.

Rainbowshark profile image
5 Replies

I was started on levothyroxine 25mcg in Dec 2021 after having symptoms of underactive thyroid. At this time TSH was 5.47 (0.38-5.35), FT4 11.5 (7.9-14.4)

In Feb 2022 TSH was checked and 4.63. No change in medication. Since this time I have slowly had worsening symptoms of fatigue, weight gain, feeling constantly cold especially hands and feet, constipation, soft peeling nails, joint /muscle pain. Had bloods checked Aug 2022 TSH 3.41 (0.38-5.35) I also checked bloods to get T3/T4 which were FT4 15 (12-22) FT3 4.4 (3.1-6.8) TSH 4.35 (0.72-4.2). All bloods were taken early morning before food and medication. I spoke to my GP yesterday and he said he is happy with the blood results. He stated that my symptoms sound like they are thyroid related and I would feel better with a dose increase but he is not increasing dose because of risk of osteoporosis and 'strange' heart rhythms. I'm not really sure where I go from here. He has made it very clear he will not increase the dose so repeat visits would be a waste of time. I would be willing to see an endocrinologist privately if this would help but would they agree with my GP? Does anyone know of a good endocrinologist in north east England? I have the added confusion of being on HRT. Any suggestions would be greatly appreciated.

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Rainbowshark
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5 Replies
Jazzw profile image
Jazzw

Your story is so common here, it’s horrific.

You have a few choices here (because you absolutely are under medicated, no question whatsoever).

See another doctor in the practice—one who has a clue, even a single clue, about how to treat someone with hypothyroidism.

Try to educate your current doctor by putting medical research in front of him (we can find some if you decide to go that way—but doctors often seem to take offence at being educated…) Goodness knows how many of his patients are being kept ill because of him. :( In a nutshell, TSH levels are not a reliable indicator of the level of levothyroxine required once someone starts treatment plus the research about osteoporosis and heart issues is about people having suppressed TSHs (which yours absolutely isn’t!) after having hyperthyroidism (overactive thyroid).

Ask for a referral to an endo (but honestly, it’s such a waste of an endo’s time—you are so clearly in need of a levothyroxine raise)

Obtain your own levothyroxine privately (not an easy option but you could at least find out that way if you’re going to feel better on a 50mcg dose (which by the way is still very much a starter dose)

I think if you can, I’d go with the first option.

Rainbowshark profile image
Rainbowshark in reply to Jazzw

Thank you.

SlowDragon profile image
SlowDragonAdministrator

suggest you read this (long) thread from earlier yesterday…..another in exactly same position

healthunlocked.com/thyroidu...

See different GP and INSIST on 25mcg dose increase in levothyroxine to 50mcg

Bloods should be retested 6-9 weeks after each dose increase

You will need further increases in levothyroxine over coming months

Rainbowshark profile image
Rainbowshark in reply to SlowDragon

Thank you

Ozziemum profile image
Ozziemum

What I can add to this wont be as helpful as the more knowledgeable folks on here, but even I know that the starting dose for an adult is 50mcg! I'm sorry you are struggling and that your struggle is not being helped by the people who are supposed to care about that. It's even worse when they say I know we should increase your dose but I wont because... 'Potential side-effects' are no reason at all not to give someone what they need. My GP started me on Adcal as soon as I got the Levo, and when I said I stopped taking them because of palpitations (when I was on 300mcg!) he just said 'well that's an easy fix' and started me on Atenolol as well. He said it was more important to be medicated for my thyroid so it was worth taking the extra medication to make up for the side effects. That worked fine, what didn't work for me was Levo so I'm now (12 years later) on T3 from a Consultant I saw privately but who will be the one I see at my local NHS hospital when I get through the waiting list. Unfortunately for you he's in Norfolk, but I'm sure the very helpful lot on here will know someone who will actually listen to you in your area. I can only say I wish you the very best of luck; and that a copy of the NHS Constitution thrown at that doctor's head is quite a weighty weapon...

Keep asking questions here, they're an awesome bunch!

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