Question about trialing levo

[Justiina]

Asking this for my cousin. She has been very symptomatic for years having high-ish TSH, but normal T4. She has been told she is depressed and given antidepressants and told she cannot be tired until TSH hits 10.

She got levo three weeks ago.

Her results 2012, TSH 3.1 ( I assume the range is either 0.3-3 or 0.4-4 as those are pretty much standards in Finland) and T4 18 ( I assume range is 11-23 as it is standard in public healthcare)

19.05 2015 TSH 4.57/ T4 14.52 /T3 4.96 (range 3.0-6.5) TPOab 30 (range >30 )

01.10 2015 TSH 4.28/ T4 16.52

01.02 2016 TSH 3.16/ T4 19.3

So she has been told she is depressed, but also been told she will get hypo eventually, but medically there is no reason to give her medication, but the doctor ordered trialing as her symptoms were worsening and her mom is hypo.

Her symptoms have been quite usual, tiredness, aching muscles, asthma and so on.

She contacted me as she heard I know something about hypo. She had not been told a lot, denied benefits of dieting etc. Not even guided how to take levo.

But the worrying thing is that she is scheduled to have next test in 9 weeks instead of 6. She told me at first she felt better on levo, but as it is only 25 mcg (the smallest dosage) symptoms are creeping back. I told her that is quite normal, as at first levo on top of T4 in her system has probably made her feel more energetic, but now that her own T4 is lowering that dosage is not enough to make her feel good.

I worry she will feel really bad before next test as it is way too long? Am I right? I also worry her TSH might have dropped , but so has T4, but that is not seen as an issue and she will be told they wont continue trialing T4 and her symptoms are down to depression. Her T3 was not super good either so she might not convert properly and with that low dosage of levo her T3 could drop too and make feel even worse. I got the idea her doctor really does not understand much about thyroid issues.

I have told her to find a new doctor now and get blood tests before the time she was given as 9 weeks is way too long. I dont understand the point of trialing for 8 weeks if it is standard procedure to up the dosage every 6 weeks and have tests to control it.

I have tried to educate her, but it is hard when she has no idea and it is a lot of information to absorb. I am just wondering if I am right telling her how much damage waiting for too long might cause and this is why she needs either to find a new doctor or go to walk in laboratory and get tested around 6 weeks after starting levo to see what is going on? I just want to present the facts right so she would understand why it is necessary.

Also TPOab 30, which just on the limit could indicate it is hashimoto and she should get TPOab retested with thyglab. I assume T3 would be important to test now as well?

Oh I just cannot write short, I go on and on and on...

Almost forgot, her vitamins have not been tested nor ferritin, I told her those would be good to get tested rather sooner than later.

[shaws Administrator]

Before the blood tests were introduced every doctor knew the clinical symptoms of dysfunctions of the thyroid gland. If hypo was thought to be the problem patients were given a trial of natural dessicated thyroid hormones which was increased until they felt better. If they didn't improve I assume they then looked for the answer elsewhere.

Doctors are so poorly trained in thyroid dysfunctions, particularly with hypothyroidism and prescribe for the symptoms (300+ and some of the commonest is depresstion/fatigue/insomnia etc).

In the UK, the guidelines state not to prescribe until the TSH reaches 10. We had a post yesterday and I will see if I can find the link, where the woman nearly went into a myxedema coma and only her husband researching and gave her T3 that serious condition was helped. Also this week we've had several links to doctors who state that the TSH isn't the best way to diagnose in quite a number of cases. The might be extremely hypo and TSH barely rises.

One doctor who prescribed upon the clinical symptoms was hounded by the GMC and he always stated that patients were put in a parlous situation due to the BTA's fixation on the TSH alone and not recognise the patients symptoms. He also said that trialling thyroid hormones was not detrimental to our health. (It is a life-saver if undiagnosed).

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[Justiina in reply to shaws]

Thanks for the links. I read those and I feel emotionally/mentally nauseous. Modern science is so far from real life.

[shaws Administrator in reply to Justiina]

I am so much better now and it just means we have a lifetime of medication. No doubt we will have ups/downs (hopefully not too many downs). Once we get to a dose which, suits or a combination, we'll be able to feel normal and well again. By reading/learning asking questions we can find our way out.

[Clutter]

Justiina, 6-8 weeks is the recommended period for retesting in the UK but some doctors won't test until 3 months. Your cousin could try to have her test brought forward a week or two but will probably be better sticking with her current doctor for now. A new doctor may not agree to trial Levothyroxine until TSH is over range.

[Jadedflower1944 in reply to Clutter]

My first blood test was followed six weeks later by another. I always thought it was every six weeks but next one is not for three months .Cant come soon enough as I feel so ill. I'm only on 75 thyroxine

[Justiina in reply to Jadedflower1944]

I thought it is 6 weeks until optimally medicated and then longer gap just to check everything is ok.

Although shouldn't trust my memory these days

[Clutter in reply to Jadedflower1944]

Jadeflower, Tell your GP you are feeling very unwell and request a repeat test 8 weeks after dose was increased to 75mcg. Bear in mind that symptoms can lag behind good biochemistry by a couple of months.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Jadedflower1944 in reply to Clutter]

I know I will sound stupid but what do you mean symptoms can lag behind good biochemistry by a couple of months

It is now 7 weeks since last blood test

[Clutter in reply to Jadedflower1944]

Jadedflower1944, I mean that once thyroid blood levels are good, symptoms may take a couple of months longer to resolve. Post your next results and ranges in a new question and members will advise.

[Jadedflower1944 in reply to Clutter]

Hi, Dr wouldn't bring blood test foreward

She said it takes 9 weeks for last dose to stay in blood ,or words to that effect. She has given me antidepressants for my anxiety. She also said the anxiety / depression may not even be from thyroid but something in my brain that built up. I have my doubts about that .

[Justiina in reply to Clutter]

As I have no experience of medication and she is lacking language skills I try my best to provide proper information so it's like blind walking deaf person

She is feeling desperate symptoms creeping back and thought levo is not working.

I agree she shouldn't just find any new doctor but she is lucky one to live next to one of the best endos who know how to treat thyroid issues.

But thanks. I didn't remember it is 6-8 weeks even tho I have read it like million times. I remembered it is 6. Well that gives a bit more room!