So I’m about to start 50mcg of Levothyroxine as a trial. I have subclinical Hashimotos. My concern is if after taking the thyroxine for 8 weeks if my TSH comes into normal range but I’m still suffering with symptoms, my GP won’t increase the dose. I asked and they confirmed this.
I don’t understand what the benefit is to take it if I will still be symptomatic. I know I’ve got to try it to see, I’m very anxious about the lack of help and understanding that I’ve so far experienced from my GP. Has anyone had this experience and would a private endocrinologist take the same approach? Can I just stop it after 8 weeks if they won’t increase my dose and I’m still symptomatic? Feeling very overwhelmed by it all.
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It would be nonsensical for a prescriber to set the dose at 50 micrograms and, effectively, assume no other dose could ever be needed on the basis of TSH alone.
TSH is poor for adjusting dose. Though it is, indeed, all too commonly the approach used.
I suggest you have a look here for a first step:
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
I just read the guidelines, my GP said she would not increase if my TSH goes in to normal range even if my symptoms have not improved on next blood test. Does that mean she will keep me on 50mcg for 6 months. In the guidelines it just says increase by response. I’m confused.
Thanks, it’s so stressful. This is why I never started meditation 4 years ago. It’s hard enough trying to get a GP appointment. I guess I’ll have to give it a go and if it doesn’t help I’ll just stop it. If it’s not going to help it’s not worth the stress to me because this will make me much worse.
I must admit I think your fears are very justified. I had the misfortune to be diagnosed and start treatment during Covid in 2020.
Obviously things were bad, the NHS under great pressure, none of us were seeing GP's much, everything non urgent was pushed to one side, justifiably.
I started off in 50mcg in June 2020, had a blood test a few months later, far longer than the 6-8 weeks it should have been. My TSH had come " into range" ( how we hate that phrase), think it was around 4 ish, and that was it, no increase, no nothing.
I wasn't a member of the forum at the time so very ignorant of the fact that my TSH was far too high. If I had known then what I do now I would have pushed for an increase in Levo and been much more assertive.
I basically was parked on 50mcg, which is the usual starter dose of Levo, for around a year or so, until I had another blood test in 2021 and my TSH had shot up and I got increased to 75mcg, then rapidly to 100mcg.
I wish I could tell you that my experience was unusual due to Covid but I've seen a lot of forum members who've been left on 50mcg or sometimes 75mcg, and as their TSH is somewhere in range they've just been left. Usually feeling unwell and symptomatic but unable to persuade their GP of the need for an increase.
Unfortunately thyroid conditions are often very poorly treated by GP's, and a lot of Endos as well. I think sub clinical hypothyroid seems to get the short straw as its not regarded as serious by medics. The fact your GP has already stated this is their treatment plan would concern me as well.
Not really lol, unless you are tiny 50mcg wont be enough and sadly a lot of people feel worse because Thyroid meds dont dont top up our levels they replace them. And 50mcg isnt enough to replacec what your body had before you became ill.
Its not until we get on an optimal replacement dose that we really start to feel better. I'm aware that I sound like the voice of doom here and its not my intention to be negative but I think we need to be prepared for what can be a bumpy ride.
Its a slow process as each increase takes time to bed in and you might find you feel better for a week or two after an increase, but as your body gets used to the dose and wants more hormone you can feel worse.
Its a very individual journey and you could see some improvements on 50mcg, I didnt but I'm not you 😆. And a lot can depend on other things like how your adrenal glands are because they can take a hammering if we've been hypo for a long time before diagnosis.
Everything slows down when we're hypo and starting on Levo or other thyroid meds can be a bit of a shock to the system. Like getting the proverbial kick up the a#$e. One thing I would say is make sure all your essential vitamins and minerals are optimal.
So vitamin D, B12, folate and Ferritin, aka iron stores. These are frequently rubbish when hypo and all are necessary for Levo to work. Its a good idea to test them first, either via GP or privately, before supplementing if required. There's loads of info on the site about optimal levels.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
have you had vitamin levels tested
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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 near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
My T4 and T3 are in normal range. They won’t test TPO antibiotics as they say they have already established I have autoimmune thyroid. I asked if they would accept a private test and she said no that test they do even in the late afternoon will be reliable. This is why I wanted to know if a private endocrinologist will have the same response to me. I have used medichecks for the last 4 years, I’m not low in any of the markers. Just not in optimal numbers and TSH around 8.
Have you had the antibody test on NHS or are they assuming your hypothyroid is autoimmune? And as you'll know as you're obviously experienced with testing, we always recommend an early morning, before 9am, fasting blood test. It can make quite a difference to TSH levels if you test in the afternoon.
Yes when I was very unwell and they did my blood work they said my TSH was out of range. I knew about Hashimotos so I asked to be tested for TPO antibodies. Because I already have 1 autoimmune immune disease they agreed to it.
I just wondered as Hashis is by far the most common cause of hypo, overwhelmingly so, but its not the only one. I've never had raised antibodies so mine might be due to another cause. But doctors assume all hypo is Hashis.
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