Thyroid UK
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Three years in and not sure what next step to take

Hello everyone. I'll try not to waffle on too much in this post but I wanted to give at least as much of the story as is needed as I'd like to ask for opinions on what to do next as I don't know what to do.

For info, I'm a 37 year old male.

About three years ago I was diagnosed with Hashimoto's hypothyroidism. Since then, I've been returning for blood tests and increasing the dose of levothyroxine by 25mg roughly every 3-6 months (NICE guidelines seem to recommend waiting 4 weeks between tests as far as I can see but my doctor seems to think every three months at least is better).

I'm now on 200mg of levo and have been for six months. After the first three months of a 200mg dose the TSH levels were still above normal and I feel as though the general levels of tiredness haven't really gone. So I was hoping that when I had another blood test and if the TSH result were high again, I might be referred to an endrocrinologist and I'd hoped to maybe start T3 treatment.

Three months ago my test results were:

Free Thyroxine: 17.3\E pmol/L 12-22

TSH: 4.8 mU/L 0.3-4.2

At my most recent test, the TSH had fallen to 3.7 bringing it into the 'normal' range.

This has complicated things somewhat for me, and left me a little confused for several reasons I'll try to organise below, sorry if it's a bit muddled.

I still feel pretty terrible. There's a general feeling of tiredness but occasionally I'll have an episode of much higher levels of tiredness. I had one of these episodes a day or two after the last blood test. Interestingly I have also had one of these episodes just before a blood test once before, and that was the only other blood test that came back with a 'normal' TSH. I wondered if there could be a possible link between episodes of high levels of tiredness and a low TSH or whether it's simply coincidence?

The other issues are that in the three years since diagnosis, I've piled on about six stone. If I'm honest, I wouldn't say it's entirely to do with the thyroid issue, but attempting to lose weight has been near impossible.

Also, my diabetes results have gone from being quite a way below normal, to being pre-diabetic.

My cholesterol level has gone from being quite a way below the upper normal threshold to being something to start worrying about (I've been a vegetarian for two decades and if anything, my diet has improved considerably this last year).

My blood pressure has also gone from being quite firmly in the middle of the normal range to being rather high. So much so, that I had to start on a blood pressure medication as soon as possible (this was started about a week before the last blood test, although I'm not sure it should affect the result?).

Whilst my blood pressure has dropped slightly, my resting heart rate has gone from about 60-70bpm to 80-90bpm which the doctor has told me I shouldn't focus on. Instead I should focus on trying to lose weight, something that's proving to be quite tricky.

I'm worried that being under-medicated for some time has started to affect other things, like the cardiac system, and I would really like to address the root cause of the issue.

I've considered ordering T3 or NDT myself, but I could just be confirming my own bias that these things are what I need, rather than going on the available evidence (which is that my TSH is now normal). So, should I just wait another six months for another blood test and see what the results might be (although should the TSH go up again I've suffered another six months worth of damage by being under medicated) or should I attempt to medicate myself and see what the results would be?

It's awfully confusing, but thank you for any assistance you could provide.

9 Replies
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Have you ever had FT3 tested?

What about vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with Hashimoto's

Add results and ranges if you have them

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3

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 ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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Hi,this is my first posting,found your site by chance ,was looking for answers + after reading a lot of what you wrote on site-went bk to dr surgery + asked for numerous blood test,prior to this had bn unwell for over 6 mths + they were treating me for an inner ear vestibule balance, had blood test done + same day was phoned by doctor to go to hospital as my cortisol blood was 31,whilst in hospital they did the adrenal test and it was 475,which they said it should b higher,they never explained much + I wasn’t 100 per cent function,I was told to take Jc 150 on waking + 50 -6hrs later,I have bn diabetic for 20 yrs+ underactive for 18 yrs + never been seen by endo,just nurse + dr at surgery,prior to me becoming unwell was put on steroids for 3 months due to granulomas in my face+ for past 6mths have had steroids injected into granulomars + dr think this is reason my adrenals have gone into dormant stage,sorry for long post but grateful for any advice thanking you

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It’s possible that the TSH test is not the right thing to adjust to. Perhaps you should increase the levothyroxine further to take free T4 higher, towards the top of the range. You may find this is where you start to feel well, and your symptoms disappear. Your GP may not like this as your TSH may then move below the normal range. But it’s your life!

I did this myself for about 20 years before starting T3 eventually. But I suggest you stay with Levothyroxine as long as you can as it’s easier to adjust. You just haven’t taken enough yet.

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I have diabetic markers too and it's a scary thing that they just throw in your face without any support or suggestion to improve things. One thing for me (but I'm not there yet) is to reduce all the things that can set off inflammation and take things that alleviate it. Hashi's antibodies are your enemy, so you need to make sure you have selenium, heed advice on cutting out gluten, dairy and added sugar. I recommend zinc, magnesium and all the fatty vitamins, omega 3 and vit C. There are vegan forms of omega 3. Myo-inositol is a new thing I'm trying to help my insulin resistance, but I can't recommend it yet!!

examine.com/supplements/ino...

If diabetic symptoms (dry mouth, peeing all the time and thirst) continue it's best to go back and ask for a fasting glucose test.

You could easily have a b12 deficiency by now (very common among hypos). There's a popular misconception that brewer's yeast is a source of b12 among some vegetarians, so bear that in mind. Don't supplement b12 until after it's been tested as per Slow Dragon's advice.

b12deficiency.info/signs-an...

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Your TSH is not 'normal'. It may be in what they call the 'normal range', but that in no way makes it 'normal'. Most people without thyroid problems, have a TSH of 0.85 to 1.25. And hypos often need their TSH lower than euthyroid people. At 3, you are hypo. So, your TSH is telling us that you are still hypo.

Your FT4, three months ago, was only mid-range. Most hypos need it a lot higher than that. So, your FT3 is probably pretty low, depending on how well you convert, but almost certainly under mid-range, which is too low. And, it's low T3 that causes symptoms like not being able to lose weight and high cholesterol.

Your doctor doesn't seem to know much about thyroid - which is pretty 'normal', none of them do. Therefore you need to know, in order not to be fobbed off.

Three months is too long to leave you on a new dose without testing. It should be 6 to 8 weeks. And, the aim of thyroid hormone replacement - levo or whatever - is to bring your TSH down to 1 or under. He needs to learn that.

Your cholesterol is not a problem, even if it has risen, it's a hypo symptom. Having low T3 means that your body cannot process cholesterol properly, so it builds up in the blood. But, that is not a problem, because cholesterol does not cause heart attacks or strokes. And you do not need statins to lower it, because statins can cause a lot of other problems, you need an optimal level of T3. Also, cholesterol has little, if anything, to do with your diet. It is made in the liver. And it is made in the liver because your body needs it. Your brain is made of cholesterol. Your cell walls are made of it. And your sex hormones are made of it. Lower your cholesterol and you lower your testosterone, etc. And, given that you are already hormonally challenged, that's not a good idea.

How are you trying to lose weight? If you're thinking of a low calorie diet, that is a very bad idea. You need calories to convert. Too few calories means you're making yourself more hypo, but converting less T4 to T3. Strenuous exercise is not a good idea, either, if you have low T3. What you need to do, once again, is optimise your FT3.

So, first of all, before you even consider self-treating with T3 or NDT, you need proper testing. It's unlikely your doctor is going to do it, so it's likely you're going to have to do it. And, what you need is :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Because it's not just about hormone. Your nutrients need to be optimal for your body to be able to use thyroid hormone. Especially NDT.

Once you get all those results, post them on here, with the ranges, and we'll be able to point you in the right direction. In the meantime, be wary of your doctor, he doesn't really know what he's doing. :)

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Just wanted to emphasise that the most important point is that you're very undernedicated. The goal is not to get inside the range. That range is for diagnosing people originally.

Once on medication you want to get your TSH close to 1 or below (on medication we need more hormone than people with healthy thyroids.) The most important guideline is to get your freeT3 into the tip third, but looks like yours isn't being measured. Most people need are good high freeT4 to get to that point on Levothyroxine.

The Levi contains T4 only, so your body needs to convert it into T3, which is the active hormone your body needs.

Its bizarre and cruel behaviour of your doctor to raise you super slowly over 3 years! I guess they plan to take another 3 years to raise your freeT4 to the top of the range? Or even worse leave you where you are! You can have a blood test and dose adjustment after 6 weeks. I also found on the NHS they were making me wait 3 months. But it shouldn't be any longer than that!

Things like T3 or NDT may help you, but the important thing is dose tuning, which at the moment you're not really getting :(

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Hi Dan

You've been given good advice already, GreyGoose has helped me enormously, so this is to reassure you. I was undiagnosed and therefore untreated for many years (about 2 decades) but now am much better so please don't worry about any damage done. You are doing the right thing seeking advice here and I'd recommend finding a good endocrinologist. The first one I saw was going to make matters even worse but luckily my GP knew that, ignored the advice and referred me to another endo.

It seems that we have to do the work ourselves, GPs are not well-informed, and I know that it's tiring and depressing when you already feel so tired but it really is worth it in the end.

Best of luck and we are here to encourage you when the going gets tough.

1 like
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Thanks everyone for the comments and sorry for the late reply, have been quite busy and couldn't find time to sit down and reply to everyone.

Will try to do so this evening.

Thanks again.

Reply

An epically late reply, the GP's blood testing schedule must be rubbing off on me.

I'll try to address things quickly.

-I have not had T3 tested (I asked, but apparently it's 'unnecessary')

-I have seemed to have developed a slight vitD deficiency so I have to take some tablets and go back in six months. So far, they haven't improved anything. All other vitamin tests have come back without problems.

-The GP won't prescribe any more than 200mg of levothyroxine at the moment, so if I increased the levels, I'd soon run out.

-To lose weight, I am just trying a trim a few things off the meal plan each day, I am not looking at calories or any other diet plans. I am trying to do fairly gentle exercise, like bike rides with the kids, or playing games with them. Unfortunately, just these can ruin the next few days with fatigue.

Sorry again for the late reply, i have a new computer now, so hopefully will be a little more prompt.

Thanks

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