Thyroid UK
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Waiting for levo increase

Can anyone comment on the effect it may have had on my body given my GP's approach to treatment. Having been diagnosed late August with autoimmune thyroiditis due to a TSH of 107 I was never given an increase in levo from 50mcg until now. This was because my GP felt that as my levels were still falling, medication should not be increased until the improvement ceased which it now has. Given everything I have read here, this should not have been left so long. Many thanks for any comments. TSH is now 17.

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It sounds like you've had regular blood tests to check what was happening and make sure TSH was reducing. Presumably TSH had reduced at each blood test. You've made good progress to get TSH down to 17 from 107 and hopefully with a dose increase you'll get more improvement soon, keep going with blood tests every 6 weeks. You'll probably want TSH around 1 or a little lower as this is where most people feel well.

Everything with thyroid is slow and takes time. It takes time to start feeling well even after TSH is where you need it to be. Your TSH was so high, your GP may have taken a cautious approach for good reasons. It can make a person feel more unwell if hormones are altered too quickly.

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Hmmm can understand your GPs logic but a TSH of 17 sounds far too high to me but you havent included the ranges (the ranges are normally in brackets nest to the result) Can you post them. Did your aGP do a Ft4 or a Ft3 (thyroid hormones) as well?

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Yet another doctor who has "sadist" on his CV.

You had a TSH of 107 five months ago. In order to save a tiny amount of money your GP has sat back and left you to suffer the pain and exhaustion and the very real dangers of massively under-treated hypothyroidism for all those months and you still aren't even close to being adequately treated.

Your doctor should be ashamed of himself. In your shoes I would complain about him. Presumably he now plans to increase your dose to, what?, 75mcg? and will leave you another 6 months while your TSH drops a little bit lower? And if the top of the reference range for TSH is 0.5 - 5.0 (just as an example) he'll stop increasing your dose when your TSH reaches 4.99. Although, based on his performance so far, it wouldn't surprise me if he thought a TSH just under 10 is fine.

For the prices of different dosages and types of Levothyroxine see this page :

bnf.nice.org.uk/medicinal-f...

For how your doctor should have raised your dose, read the section on "Initiation and titration" at this link. You could print it out and show it to your doctor if you want. But personally I'd rather hit him over the head with a computer, tell him to bring himself up-to-date, and to stop torturing his patients :

cks.nice.org.uk/hypothyroid...

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Unbelievable Nowhere at all in these guidelines does it tell medics what the aim of Levothyroxine dose is in form of test results for adequate treatment

No wonder they are left floundering in the dark

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Yes the NICE Clinical Knowledge Summaries have been amended a few times in the the last couple of years, and they have removed some information that was actually useful to patients. And yet the section on hypothyroidism still says it was last amended in April 2016.

And another thing that annoyed me last night...

When I was looking for info last night for the OP to read I looked for the British Thyroid Association website. It wasn't there, still isn't at the time of writing, and hasn't been on many occasions over the last few months.

When I looked at the British Thyroid Foundation website they have a Guidelines section. They have no info on diagnosis and treatment of hypothyroidism.

btf-thyroid.org/professiona...

I looked for guidelines from the European Thyroid Association, and they only guided people to this document published in 2012 :

2012 ETA Guidelines: The Use of L-T4 + L-T3 in the Treatment of Hypothyroidism

karger.com/Article/FullText...

eurothyroid.com/guidelines/...

There used to be some (poor) information on hypothyroidism on these various sites I've mentioned, but it appears to have been withdrawn over large parts of the world. I wonder how long we'll have to wait for a replacement and how sadistic that will be.

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its unbelievable that nowhere is there official NHS guidance for GP's (or patients) that the aim of replacement thyroid hormone, for most patients to feel well, is to bring TSH to LOWER part of range and FT4 towards UPPER part of range and FT3 must be at least half way in range

No wonder there are nearly 80,000 members on here and growing

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I should have added that the TSH of 17 is an increase from the last test which had come down to 9. My levo was increased to 75mcg on Friday. I have asked for a printout of my results but Dr said on her computer it came out so tiny it was illegible. My T4 readings started at 5 when TSH was 107 and increased to 14 and then 15 which it is now. All I know is that the upper end of T4 range here is 22. GP increased dose as she said if TSH has started to rise again then the T4 will inevitably start to decrease.

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Ask at reception for a print out. I have a healthy cynicism where doctors are concerned, they don't like us having any knowledge.

If it really does print out small and they can't enlarge it then ask to see the screen and write down the test, result and reference ranges yourself, or take a photo on your phone.

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SeasideSusie,

If it really does print out small and they can't enlarge it then point them at the Equality Act 2010 and demand that they make suitable adjustments to enable you to read them.

(I do realise that doing this requires confidence and probably not feeling absolutely dreadful. So is anyone available who could back up Shenka?)

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Make sure to get retested at 6-8 weeks

Also ask for thyroid antibodies to be tested, plus vitamin D, folate, ferritin and B12

All these vitamins are often much too low if left under medicated (as you clearly were)

Post results and ranges when you get them

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

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Thanks to everyone for feedback. It is only a small rural practice so I am careful to avoid becoming the patient from hell and, as you say, when you're under par your mental agility etc is rubbish. I did ask once at reception and they would charge to print it out and asked which results I wanted. I thought all test results came back on one page?

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Can I suggest you take someone with you to your appointments with doctors and nurses - someone who knows how you are, how you have been, is sympathetic to your health problems, and who can learn how hypothyroidism should be treated.

Unless I am going to see a doctor for something visible that can't be denied I always take my husband with me. It makes doctors far more polite and less likely to argue, and it is always useful to have a witness. You can also record appointments with doctors and nurses. You don't need permission and you don't need to tell them you are doing so if you don't want to.

I think your only option is that link I gave you last night to the NICE website that mentions initiation and titration of dose.

cks.nice.org.uk/hypothyroid...

Print it out, highlight the section concerned, and make sure that the person you take with you is familiar with what it says.

Can you see a different doctor at the practice? The one you've been seeing is probably one of the worst I've heard of on this forum, although he does have lots of competition for being appalling.

Bear in mind that, although you don't want to be the patient from hell, that the longer you stay untreated or undertreated the more damaged your heart, kidneys, liver, brain and everything else will get. You need to start thinking of yourself and your future. You may recover to a large extent but you will not recover all the function you've lost, even if you end up on the ideal dose of meds that suit you perfectly, and get all your nutrients optimised.

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You are so right HB about taking someone with you.

I had been to the surgery 3 times about something (not thyroid related but potentially serious), fobbed off every time, even had a 'diagnosis' of something it most certainly isn't! I first mentioned it last August, even been told after 3 months "Ermmm, I don't know what it is, wait and see, come back if it doesn't get any better. What are you doing for Christmas?" I replied "Nothing, seeing no-one, going nowhere, which is a good job considering how unwell I feel."

Two weeks after that appointment I felt so ill my son booked me an on the day appointment. Unfortunately it was with the same GP who didn't know what it is. I asked my son to come into the consulting room with me (he's similar age to the GP), I said to just sit there (he would have spoken if I'd have indicated that I wanted him to). Oh, what a difference! After refusing medication (much to GP's surprise) he offered the investigation that should have been suggested 4 months and 4 consultations ago. I'm ready for a complaint if something serious is found!

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That's awful! But, sadly, doesn't surprise me.

I hope you don't have to wait for too long for an appointment, and that the investigations prove fruitful. Being left in limbo is always the worst possible outcome.

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My appointment is through, Sunday 11th February. 5 weeks from my visit to GP. I'm thinking he might have marked it urgent as when my son needed this investigation a couple of years ago the wait was 4-5 months so I paid for him to have it privately.

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Good luck with the appointment. Take your son with you again!

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Thanks. He is driving me to the hospital but as it's an MRI scan not an appointment with a consultant I'll tell him to go and do some shopping while he waits for me, it's almost impossible to park at the hospital.

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'This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.'

Interesting that the guidelines say to alter dose every 3-4 weeks according to response. So presumably your doctor ordered a blood test every 3-4 weeks to keep an eye on your response? Good plan to get a print-out if not already done so.

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