Had radioactive iodine now hypothyroid but feel awful on levo

[Mitch1234]

Low TSH normal T3 and T4 on 100 of Levo but still feel awful. Weight gain and fatigue. Dr says I just have to get used to it. Can’t carry on like this

[Lora7again]

Can you show us your normal results please including ranges?

[Mitch1234 in reply to Lora7again]

TSH 0.06

T4 18

T3 4.6

[Lora7again in reply to Mitch1234]

Have you got the ranges please, because they can be different from Lab to Lab.

[Mitch1234 in reply to Lora7again]

eference Range: TSH: 0.27 - 4.2 mU/L, Free T4 12 - 22 pmol/L, Free T3: 3.1 - 6.8 pmol/L

[Lora7again in reply to Mitch1234]

I think your T3 is too low. Most people who have RAI need T3 to feel well and they do very well on NDT. I would join Elaine Moore's site because she had RAI because of Graves and she helped me get diagnosed 10 years ago when my GP told me I was suffering from the menopause for over 2 years.

Here is a link to her site.

elaine-moore.com/

[greygoose]

TSH 0.06 (0.27 - 4.2 mU/L)

Free T4 18 (12 - 22 pmol/L) 60%

Free T3 4.6 (3.1 - 6.8 pmol/L) 40.54%

Looked at like that, you can see the problem quite clearly: you don't convert very well. If you converted well, your FT3 wouldn't be lower than about 55%. As it is, your FT3 is well below mid-range, so far too low to make you well. T3 is the active hormone, which causes symptoms when it's too high or too low.

I think that doctor of yours obviously knows nothing about thyroid - is it a GP or an endo? Is it possible to see someone else? Someone who won't just look at the TSH?

Did you have RAI due to Grave's? If so, it's possible that your TSH may never rise again because the Grave's has down-regulated the HPT axis, meaning that the Pituitary - which produces TSH - doesn't work as well as it did and doesn't respond to thyroid hormone levels.

Doctors tend not to know anything about conversion, in general, so what can you do for yourself? Well, first thing would be to get your basic nutrients tested: vit D, vit B12, folate and ferritin. Also selenium, if you can. All nutrients need to be optimal for good conversion. When you get the results, post them on here - with the ranges - and we'll advise about supplements. Optimising your nutrients could possibly improve some of your symptoms, anyway.

[SlowDragon Administrator]

Welcome to the forum

How long have you been on 100mcg levothyroxine

Do you always get same brand of levothyroxine?

Which brand of levothyroxine have you got?

Bloods should be retested 6-8 weeks after each dose increase

Low vitamin levels are extremely common

Ask GP to test

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

[SlowDragon Administrator]

Current results show poor conversion

Improving vitamin levels can improve conversion rate

So that’s first step

Was RAI due to Graves?

[Mitch1234]

I had 2 bad episodes of thyrotoxicosis

Was told to have surgery but opted for radioactive iodine instead

No diagnosis ever given for reason for thyrotoxicosis

Have put on 2 stone can’t lose the weight

Tired

Mood swings etc

Been on Levo 100 for 3 years now

[greygoose in reply to Mitch1234]

Was this a reply to someone? If so, they won't be notified because you didn't click on the blue 'reply' button under their comment.

That was very unprofessional of your doctors to destroy your thyroid without doing the proper testing. Had they known the cause of your thyrotoxicosis, they probably could have done something about it. But, when you say 'thyrotoxicosis', what exactly do you mean? Thyrotoxicosis is an extreme condition, but a lot of doctors say that's what you have if your TSH is just a little low. And, they don't always do the right tests. Do you know what your results were, during those periods?

You might think it doesn't matter now that your thyroid has been killed off. But, in a way it is important to know if you had Grave's because, as I said above, it would explain a continual suppressed TSH. That's something that doctors don't understand, and they continue to dose by the TSH, to the detriment of the patient. And, it looks like that's what's happening here.

With such a low FT3, you won't be able to lose weight, that's clear. You're going to have to investigate ways of raising it to get rid of your symptoms. First step, as I said, is to get your nutrients tested, and see if the problem lies there.

You could try a small increase in levo, but you don't want your FT4 to go too high, because that would make your conversion even worse.

Or, you could look into the possibility of sourcing T3 or NDT. But, that's really not easy right now.

[Mitch1234 in reply to greygoose]

Hospitalised with T4 levels 4x normal resting pulse of 130 shaking pitting oedema of my feet

But as said nobody gave me a diagnosis

[greygoose in reply to Mitch1234]

OK So that sounds like Grave's. Pity they didn't test antibodies. But, you should be aware of the implications to your TSH, and not allow doctors to dose by your TSH level, because it will result in making you very ill.

[SlowDragon Administrator in reply to Mitch1234]

You are legally entitled to printed copies of ALL your blood test results and ranges.....now and previously

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Highly likely you have Graves’ disease

TSH is especially unreliable after Graves and low vitamins especially likely

Leaky gut can lead to gluten intolerance too

Clearly your Ft3 is too low

Likely to have low vitamin levels as direct result of being under medicated

So first step is to get FULL Thyroid and vitamin testing....vast majority of UK patients forced to do this privately

guidelines by weight might help push for dose increase

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Come back with new post once you get full results and got hold of historical results too

Access to online records

healthunlocked.com/thyroidu...

[fuchsia-pink]

It's pretty well impossible to lose weight until your medication is at the right level. As others have said your free T3 is out of balance with your free T4 - and both are lower than I would like (I need mine in the top quartile). Also, it's entirely possible that the brand of levo doesn't suit you and you would do better with a different brand. They're not all the same - the fillers are different.

Good luck x

[pennyannie]

Hello Mitch

Well I too was treated with RAI but I did have a diagnosis and that was for Graves Disease.

RAI slowly burns out the thyroid in situ, slowly disabling this major gland and ultimately renders you hypothyroid. During this process you will be monitored in primary care and prescribed T4 - Levothyroxine to replace varying levels of Levothyroxine as your own gland's production declines.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 : T4 is a storage hormone and your body needs to convert this into T3 which is the active hormone that the body runs on, and read T3 is about four times more powerful than T4, and that the average person uses about 50 T3 daily, just to function.

In order for your body to fully convert and utilize the T4 - Levothyroxine, your core strength vitamins and minerals need to be maintained at optimal levels, and you may need to supplement ferritin, folate B12 and vitamin D since they may be seen as being " in range " and nothing to worry about, and not qualify for any NHS prescription.

RAI is known to trash vitamins and minerals and I needed to supplement all of the above and I still have to maintain my levels to help me feel as well as possible.

As already mentioned your conversion of the T4 into T3 is low and most people need both the T3 and T4 in the upper quadrant of the ranges for optimal well being.

You may find that by optimizing your vitamins and minerals and an increase in your Levothyroxine dose your conversion improves and your T3 rises in the range, as it is low T3 that causes the symptoms as detailed.

Personally I just think that if there has been a medical intervention and the thyroid either surgically removed or burnt out in situ with RAI that both T3 and T4 should be on the patients prescription for if, and when, probably required.

Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 into T3, and some people simply need both vital hormones dosed and monitored independently to bring them into balance and to a level of wellbeing acceptable to the patient.

I found the following book very helpful and along with this amazing site I've been able to acquire better health and am much improved. I found little help with my continued ill health within the NHS and I was refused a trial of T3 owing to my TSH being suppressed.

I was too ill to keep asking and standing my ground so I decided to trial the T3 for myself.

This worked, and it felt like my brain had been turned back on - I have since gone on to self medicate with Natural Desiccated Thyroid as it seems " softer " on my body.

Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism. It's a relatively easy read and although the title suggests one still has one's thyroid, the author, Barry Durrant - Peatfield writes in such way, that we learn how we need to compensate for having " lost our engine " and the conductor of all our body parts, including our mental, emotional, psychological, physical and spiritual well being, our inner central heating system and our metabolism.

There's much to read and learn but you can get better health, many of us here were where you are, so start reading, even learning from other posts on this website, check out where your vitamins and minerals sit in the ranges, and be your own best advocate.

There is also the Elaine Moore Graves Disease Foundation website, where there is much back ground reading, and although we are not sure of your original diagnosis, it's another platform well respected, with well researched papers and a world wide following.

[Nanaedake]

I don't think your doctor saying, you just have to get used to it is very helpful. I don't think they have the foggiest conception of what an out of kilter thyroid does to you. I had a thyroidectomy and went on a roller coaster ride but I'm now living a good life so there is light at the end of the tunnel.

It could be that your thyroid is still slowly burning out and while thyroid status is changing you are likely to feel unwell but it's not forever. If you had Graves disease, the antibodies don't vanish even without a thyroid so may still give some symptoms down the line but once thyroid hormone is Balanced you should get back to normal. It can take a couple of years to learn how to live well but improvements should begin as thyroid settles.

Although some people advocate T3 or NDT, it is near impossible to get T3 prescribed in UK and NDT would need to be sourced independently.

One thing you can do is check vitamin levels are optimal, get blood tests done and maintain good levels. Good levels will aid your recovery. Vit D, folate, ferritin and B12. Good levels can also help better conversion from LT4 to T3.

[Gismo333]

NO you don't have to stay like this. They destroyed my gland and I ended up with ME, CFS and Fibro. You are not converting the T4 to T3. You need some T3 to add to the T4. Blood tests do not work, have never worked, they were brought in as a guide not to be the be and end all.

[Gismo333]

T3 is needed to stimulate the receptor sites on the cell. Unless sufficient T3 is converted from T4 you won't get anywhere with health. Blood tests are useless, they don't tell you anything. The TSH is near useless, FT3 and FT4 only show what is circulating in the blood. Only resting pulse first thing in the morning and symptoms will show the true picture