on 50mg levo and blood "in range"

[bd79og]

I finally got thyroxine (Levo) prescribed 6 weeks ago and have been on the introductory dose of 50 mg and just had my first test done (first thing in the morning and fasting without taking the morning dose until after the blood was taken). My results was 3.89 (range up to 4.3) so this is considered NORMAL by the GP and I am to continue on the same dose of 50mg for another 3 months before being retested. I don't feel right and still have lots of hypo symptoms which are making my life very difficult and feel desperate to wait that long. How do I make the most of the thyroid hormone that they are allowing me? I eat a gluten and casein free diet which is very very low in amines and salicylates as any increase in the later makes me very ill (even a handful of green beans is too much). I supplement with B12 and my B12 is now up to 700 (normal range up to 900). I told her that the curve for TSH is funny and that many people don't feel well until they have a TSH of around 1.0 but she did not listen, a few points higher and I would have had an increase in prescription!! Also how do I get my TSH up for the next test? Is it worth getting hold privately some levo and increasing the dose myself? I need to be able to eat a wider range of food and to not react to things such as vitd for my long term health and my research indicates that thyroid is key to this and will when right make me feel a lot better generally but the GP really does not seem to get how hard this is!!

[HarryE]

I'm not surprised you still fell ill. my TSH never got above 4 & I was half dead. Needless to say they wouldn't treat me at all, so I have had to do it myself. They should be aiming for a TSH of below 1. Louise Warvill has an article that details that which you could show to your GP.

For future tests your TSH will be highest early in the morning.

[HarryE]

How are your iron levels?

[bd79og in reply to HarryE]

iron was high in range as was folate back in July, nice to know that I'm not mad feeling still ill!

[HarryE in reply to bd79og]

How high was your iron - as too much can indicate inflammation. Do you have the actual results?

[bd79og in reply to HarryE]

CRP 0.40 <3.0 mg/L

Ferritin 65.7 20 - 150 ug/L, Serum Folate 31.06 10.4 - 42.4 nmol/L

I think that these are ok and are part of why the gp won't consider that I have coeliac despite positive blood results and a negative biopsy. I had been gluten free apart from 10 days before this test for about 6 months.

[HarryE in reply to bd79og]

Ferritin is best at 70-90 so isn't too bad but could squeak up a bit, as could folate. B12 ranges are pretty hopeless so that could be better too.

But you can be gluten intolerant without actually being coeliac. If you feel better without it avoid it.

And as to buying more levo, well you could but shouldn't have to. But if you are going to self medicate anyway I would choose something else

[bd79og in reply to HarryE]

thanks I will look into it and go back to GP armed with a reference or two!!

[Hidden in reply to bd79og]

If you tested serum positive for celiac I would assume that you are celiac, there just isn't enough damage in the intestine yet for it to meet the "gold standard" test. Just keep off gluten completely.

If your GP won't increase your dose and you still feel ill and have a TSH which we all I think on this forum would say is way too high, then you can consider self treating, either with levo or with a mixture of levo and T3, or NDT. You can monitor your own levels of TSH, T3 etc with private blood tests, as well as buying a blood pressure monitor and keeping a careful eye on how you are feeling. However, this is a big decision to take and you will want to research it carefully. Many many people on this forum self medicate successfully and carefully, and self monitor and self test. However there are reports on other forums of some people who have self medicated irresponsibly, taking thyroid pills like sweets, and have got into trouble as a result.

Self treatment is a decision you have to take a lot of responsibility for, but it is one way forward.

[shaws Administrator]

Your doctor is another who mistakenly believes that as long as our TSH is anywhere 'in range' no more hormones are required. He is wrong. Dr Toft (ex President) of the British Thyroid Association says this in his article:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

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).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added."

Thyroiduk's office doesn't open till 5th January but you can email [e-mail] and ask for a copy of the whole Pulse article to show your GP. Some GPs refuse to acknowledge this article, even though Pulse online is a doctors' magazine.

I would send a note to your GP enclosing a copy before your appointment and highlight question 6. 50mcg of levo is a starting dose and should be increased until you feel better and a TSH of around 1 or below suits many.

For your blood tests for thyroid hormones, make the earliest possible appointment and fast (you can drink water). Leave approx 24 hours between your last dose of levo and the test and take it afterwards. Always get a print-out of your blood test results with the ranges for your own records and you can post if you have a query.

Also request a Vitamin B12, Vit D, iron, ferritin and folate as we are usually deficient.

It is a brand new learning phase if diagnosed with hypo, if we want to recover our health the best way possible. Many doctors have absolutely no knowledge or know clinical symptoms as they have been informed that the TSH reveals all that is required and many patients are told there's nothing wrong because the TSH hasn't reached the magic number of 10 despite disabling symptoms.

[bd79og]

Thanks for all your comments. I have found the NICE guidelines and will go back to the GP in a couple of weeks especially if I keep feeling so rough. The guidelines say "If the person does not feel well with TSH in the upper half of the reference range (2.5–4.5 mU/L), then it is reasonable to aim for a TSH in the lower reference range (0.4–2.5 mU/L). For example, by increasing the levothyroxine dose by 25 micrograms daily or on alternate days." so perhaps she will pay some attention to me still feeling poorly!!