Is trial and error of medications the only way ... - Thyroid UK

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Is trial and error of medications the only way to treat hypothyroidism?

Britangerine profile image
8 Replies

Apologies to all those who are sick of the sight of me, but I'm genuinely confused.

I went to the GP who reluctantly prescribed levothyroxine (t4) 50 for me after I was insistently convinced my symptoms corresponded to hypothyroid.

One of my hypo symptoms is hair loss, and I've heard one of the side effects of levothyroxine is, you guessed it, hair loss. So I'm really reluctant to embrace levothyroxine.

In my last blood test my tsh was 3.29 and my free t4 was 14 (12.0 - 22.0) and my free t3 was 4.1 (3.1-6.8), would I only need t4 or would I also need t3? I would prefer to take natural sources of thyroid....

So basically my questions are:

1. Is is trial and error until you find the medication/dose that solves your symptoms?

2. Specifically for hypo-induced hair loss, what has worked the best? Any specific regime?

3. If I decide to go the natural way and take NDT, where can I get it from the UK?

4. Based on my blood test results, would I need to take a source of t4 and t3?

Thank you guys so much. In this minefield of thyroid madness, I'm glad to have found this site.

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Britangerine
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8 Replies

Britangerine,

I am sorry that you are feeling so unwell.

Hair loss can be down to a number of deficiencies in hormones or nutrients and even iron.

Levothyroxine is the standard treatment prescribed by GP's in the UK.

Your results are all within range so I am assuming this is a trial of Levothyroxine so 50 mcg is a good starting dose.

You have not advised when you started medicating so again I am assuming it be in the last few days. Levothyroxine takes 7/8 days to be absorbed before it starts working and up to 6 weeks to initially saturate the body which will only tolerate small increases at any one time.

Your doctor should retest your thyroid hormone levels after 6 weeks and adjust the dose according to results and retesting after another 6 weeks if necessary..

Leave 24 hours between last dose and blood draw and try to have the blood draw early in the morning after fasting (water only) when TSH is highest.

It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

Depending on how long your hypothyroidism has remained undiagnosed, your symptoms may continue for a while, but if you are hypothyroid, you should start to see an improvement in your symptoms shortly.

The goal of Levothyroxine is to restore the patient to euthyroid status and for most people that means TSH just above or below 1.0 when medicating.

Symptoms can lag behind good biochemistry by 6-8 weeks so some symptoms may linger.

People with thyroid issues often have vitamin deficiencies and it is recommended that you have tests for B12, vit D, folate and ferritin as optimum levels are required to ensure thyroid meds are absorbed.

Flower

This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

thyroiduk.org.uk/tuk/treatm...

Hypothyroidism explained

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

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Disclaimer: 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.

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Padster7 profile image
Padster7

Hi Britangerine

I'm hypo too and hashimotos. I only went to see my GP re hair loss and tests then showed hypo. I have been totally paranoid about my hair as I lost a big patch 3x3.5 inches and was told by my sister who saw it at the back of my head. It is growing back but slowly and I have to disguise the patch with coloured spray. I think the rest of my hair is thinning although people tell me its fine. I take biotin and selenium and have increased my iron, vitamin D and B12. I have been counting hairs lost in the shower when I wash my hair every other day and this has been between 70 and 200. I have read that on average we can lose 100 hairs a day so my loss could be considered normal-ish!

It still terrifies me though.

It's hard to know what's working or isn't working. I'm just keeping all my fingers and toes crossed xx

in reply to Padster7

Oooh Padster,

So sorry to hear you are experiencing hair loss.

This is classic symptom of a hormone imbalance.

Your poor body is not only have to acclimatise to new thyroid hormones levels but you are dealing with grief too. Any shock ( mental or physical) can alter thyroid function and levels.

Hang in there. Thinking of you.

Flower

Britangerine profile image
Britangerine in reply to

Gosh, it's amazing how the thyroid is affected by and affects so many things. I too had a horrible shock about this time last year, although I did have some hypo symptoms before that. I guess the shock was a catalyst for this new wave of mega symptoms.

in reply to Britangerine

Yes a shock or even a major change like pregnancy or menopause can be the catalyst too.

F

Jayneywales profile image
Jayneywales

Hi. I'm hypo too and have been having treatment for about 18 months now. Upping my Ferritin levels helped my hair no end.

greygoose profile image
greygoose

Basically, the answer to your title question is 'yes'.

Levo works for the majority of people - as far as we know. However, there's a largish majority of us that Don't do well on it - or it makes us worse. There is no way of knowing which group you're going to belong to until you've been on it for a while.

Some people Don't convert very well - which makes levo only the wrong choice for them. But with your results it's impossible to tell if you're converting because you Don't have enough T4 to convert. You need to be on T4 for a while to bring your FT4 level up before you can look at the results and see if you're converting.

When you say 'natural', I'm not sure you understand exactly what NDT is. Certainly the actual hormones come from pigs, but added to those hormones are an awful lot of fillers and things that enable the manufacturers to make a tablet with a reasonable shelf-life. Nothing very natural about that. And, besides, NDT doesn't suit everybody, despite what a lot of people claim. If you have Hashi's, for example, it could provoke antibody attacks. Do you know if you have Hashi's? However, nobody is going to know if it's going to suit them until they try. Some Hashi's people do very well on NDT. Others Don't for other reasons.

And, then, there are people who can't tolerate any form of T4, whether it be synthetic or in NDT. And they are best off with T3 only. But, again, you never can tell.

A problem with all types of thyroid hormone replacement is that doctors are often reluctant to let us take enough to make us well, because they are afraid of a suppressed - or even low - TSH. Needless to say, these fears are ungrounded, but it leaves the patient with the impression that their thyroid hormone replacement doesn't work. So, you not only need the right form of THR, but the right dose. And nobody, not even doctors who think they're so clever, can know in advance what dose you are going to eventually need. This is especially so if you have Hashi's.

Another variable that makes patients think their THR doesn't work is having nutritional deficiencies, which doctors know nothing about, and Don't want to test for. You need to be optimally nourished for the HTR to work.

And yet another deficiency that can mean your HTR isn't making you better, is having low cortisol. Something else doctors know nothing about. It's not all down to thyroid hormone.

Which is why we have to educate ourselves to the best of our ability to be able to guide our doctors, or recognise when it's our doctors making us unwell, rather than the choice of thyroid hormone replacement. :)

SilverAvocado profile image
SilverAvocado

The simple answer is with that low dose, and such a short time on it, we know very little. So yes, trial and error is the only real way. I think it was you who I said yesterday that you can think about another blood test in 6 - 12 weeks. Then a dose adjustment and another 6 - 12 weeks. So it will be a long process.

There's nothing in your blood to suggest levo won't work, and it does for about 85% of people. Looking at your results, your T3 level actually looks a tiny bit better than your T4 level, which is almost non-existent.

In terms of hair loss, the main thing thatfhelps is getting your thyroid replacement fixed. Altho it can also be caused by vitamin and mineral deficiencies. I expect you were told a lot about what vitamins to get tested and what to do about them in your other thread.

NDT is hard to get hold of in the UK, and people are usually buying from overseas. It's not an easy road to follow, as you are constantly sourcing your own medicine from possibly unreliable suppliers, and getting hassled by doctors when you go in for other illnesses, etc. It's much cheaper and simpler to take levo if you can manage on it. But NDT is something you can find out a lot about by hanging around and continuing to read this forum.

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