Decreased levothyroxine over past year

[Maggie9932]

Hi there, does anyone have any help with this please

I am a Graves’ disease patient and have had radioactive iodine in about 2002

I was on 200 micro gram of levothyroxine until last January, I was switched from liothyronine in 2015, as per nhs guidelines, I immediately put on three stone in weight, but in January 2019 I had a crisis attack and was in a and e, my results at that time were as follows.

TSH suppressed less than 0.03 normal range 0.35-4.94

T4 20.0 pmol/l normal,range 9.0-19.0

The gp started reducing my levothyroxine he didn’t do T3 tests until 10/5/19 I asked him if he could check it

T3 4.2 pmo/l normal range 2.6-5.7

He is a bit obsessed with getting my TSH up so by September 2019 my levothyroxine was reduced to 125mg a day and my TSH was 0.29 mu/l normal range 0.35-4.94

On January 9th 2020 I had another crisis attack whilst I was actually in the hospital pathology lab I had been feeling very overactive since the 6/1 and the gp sent me for bloods , so I ended up in a and e again, pathology sent me.

Because my TSH was coming up my gp had only asked for that to be tested, I found this out a few days later,

TSH on 9/1/20 0.69 mu/l normal range 0.35-4.94

I was very unwell with hyperthyroid problems and in the end I did my own tests with medichecks on 16/1/20

TSH 7.0 normal range 0.27-4.2

Free T3 3.91 normal range 3.1-6.8

Free T4 22.6 normal range 12-22

I feel awful, definitely hyperthyroid problems, I took those results on a better day, but I don’t know what to do next, my doctor has said they won’t recognise the medicheck test results. He has referred me but that could take months , does anyone have any ideas ?

I would appreciate some pointers

Thankyou

[Maggie9932]

Apologies that should say TSH 0.7 from 16/1 blood tests not 7.0

[greygoose]

I would say: ditch your GP, he has no clue what he's doing; buy your own T3 and self-treat. You have a serious conversion problem. And, not only is your GP not doing anything about it, he doesn't even know it exists because he knows nothing about thyroid. He is going to make you ill and keep you ill. What's the point of that?

[Maggie9932 in reply to greygoose]

Hmm, I have the same thoughts really,

[Maggie9932 in reply to greygoose]

Hi grey goose, can I just ask if I am undermedicated at the moment on 125mg a day of levothyroxine, should I stick to that dose and add t3 to it as per your previous post nine months ago which I have just found, or should I still decrease the levothyroxine by 25mg?

[greygoose in reply to Maggie9932]

I think you should reduce your levo by 25 mcg and add in 1/4 tablet of T3. You can increase the T3 in two weeks. And, you can always increase your levo again if it goes too low.

[Maggie9932 in reply to greygoose]

Thankyou grey goose,

[greygoose in reply to Maggie9932]

You're welcome.

[Jazzw]

With some people who’ve had Graves, the TSH never comes back up—and even if it does, it may not return to a more “normal” level. It’s a well documented phenomenon. So your doctor is a bit of a numpty if that’s what he’s focusing on.

You aren’t experiencing hyperthyroid symptoms—not with those results. You’re undermedicated. The symptoms for over and undermedicated can be pretty similar.

The problem with being undermedicated is that it starts to affect all sorts of other things, like your gut’s ability to absorb nutrients like B12 and iron. It’s likely that while your doctor’s been messing about with your dose he’s made you more ill.

Is there another, perhaps better educated, doctor you can switch to?

[Maggie9932 in reply to Jazzw]

I already switched from the one who had me on 200mg a day, he didn’t even notice in my results for ages before that, and I just thought it was ok because I never heard from them

[Marz]

Lots of good discussion in your post/thread of 9 months ago .. maybe re-read to avoid repetition. greygoose came to the rescue ⛑⛑

[Maggie9932 in reply to Marz]

Silly question but how do I find the first post I put up?

[Marz in reply to Maggie9932]

Click onto your username above and all will be revealed ... 🤔

[Maggie9932 in reply to Marz]

👍 Thankyou

[jimh111]

Maggie, What are your hyperthyroid signs and symptoms? We can't really give any useful comments without these details.

[Maggie9932]

Hi there, I am a bit heat intolerant, but then I get cold as well, dry facial skin, hair is dry, weight is going down, low grade chest pain like I used to get before I was diagnosed, now I just feel ill really. Headaches which I don’t ever get, I was getting some tachycardia when I walked last week but that’s settled down again

[greygoose in reply to Maggie9932]

I would say they were hypo symptoms, because of your low T3. So many symptoms can be both hypo and hyper.

[Maggie9932 in reply to greygoose]

I did say that to the doctor, he won’t prescribe t3 though, I already asked. I don’t know where to get a prescription for it from either 😕

[greygoose in reply to Maggie9932]

You can buy it on-line without a prescription. Write a new post asking people to PM you their trusted sources.

[Maggie9932 in reply to greygoose]

Ok, 👍

[jgelliss in reply to greygoose]

GG says it so well . One can have *Hyper* symptoms with Highish FT4/FT3 as well. And *Hypo* with lowish FT3 .

[pennyannie]

Hello Maggie

It is imperative post RAI thyroid ablation for Graves Disease that you are monitored on T3 and T4 blood test results, with aim being to have both essential thyroid hormones balanced and generally they need to be in the upper quadrants of the ranges, for overall wellbeing.

If you then have a conversion issue, it can be seen, and the medication adjusted accordingly.

T4 is a prohormone and your body needs to be able to convert it into T3 which is the active hormone that the body runs on. I read most people need about 50 T3 daily to function.

As it had already been established that you had a conversion problem and your body unable to convert the T4 into T3 I believe you should have been kept on the T3 only medication.

Graves patients have unreliable TSH readings, and as such the TSH should be discounted in preference for a T3 and T4 reading. Your TSH probably needs to be low/suppressed for you to feel well, and that's ok.

The replies you received both today and some months ago are consistent.

I'm with Graves post RAI and became very unwell having been managed on monotherapy with Levothyroxine and having to maintain a TSH in range to please my doctor.

I was refused a NHS trial of T3 in early 2018 and so purchased some for myself and started self medicating.

Thanks to this amazing site I've managed to get my life back as best I can, and continue to buy my own thyroid hormone replacement.

[Maggie9932 in reply to pennyannie]

Thankyou, I am a bit nervous about changing things myself, but I think it’s the only way now,

[pennyannie in reply to Maggie9932]

I know it probably seems daunting - but you do know that when on T3 you were well -

In the first instance can you consider changing to a different doctor ?

A referral to an endocrinologist who is on the Thyroid uk list might be a option ?

If you can't get anywhere through the NHS, maybe a private endo on the Thyroid uk list.

If all else fails, you can of course, purchase your own thyroid hormone replacement.

You were on T3 and doing well, you will just need to slowly re-instate the dosage that gave you the best outcome.

[Maggie9932 in reply to pennyannie]

Ah, I will check the thyroid uk list, I didn’t know I could purchase my own T3 ? I thought I needed a prescription

[pennyannie in reply to Maggie9932]

Many people on here have been forced into the same corner as you and ultimately end up buying their own thyroid hormone replacements.

There is a list of " sympathetic endos "held at Thyroid uk - email for a copy -

If you start another post asking for PMs ( private messages ) people on T3 will answer giving you suppliers that you can buy from when without a prescription.

Some people manage to get their doctors to write a T3 prescription which then opens up the buying options for you - there are full details worth checking out on the Thyroid uk website.

[Maggie9932 in reply to pennyannie]

I have the list of endos, i have found one fairly near to me, I will check her clinic website, is it ok to ask people if they know where I can get t3 without prescription on here?

[Marz in reply to Maggie9932]

Yes- ask for Replies by PM ...

[SlowDragon Administrator]

Before starting on T3 strongly recommended to get vitamin D, folate, ferritin and B12 tested

As you have been under medicated for a long time vitamin levels are likely extremely low

Vitamin levels need to be OPTIMAL for Levothyroxine or T3 to work well

Are you on strictly gluten free diet?

Many people after Graves' disease find strictly gluten free diet helps or is essential

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[Maggie9932 in reply to SlowDragon]

Hi there Thankyou, not strictly gluten free no, I have just started taking the supplements now because I did think some of my tests for vitamins etc were too low, I take the ones in the leaflet listed as recommendations by dr arem.

I had an endoscopy in late 2018, it was normal. 👍

[SlowDragon Administrator in reply to Maggie9932]

Have you had vitamin levels tested?

They need testing minimum of annually...ideally more frequently especially if supplementing

[Maggie9932]

Hi there, I do have full blood tests , Which show some results

9/1/20 ferritin 108 ug/l normal range 15-200

9/1/20 folate 5.8 ug/l normal range 3.0-20

9/1/20 b12 244 normal range 180-640

23/8/19 vit D 82.6 nmol/l normal range 71-200

I have had low vitamin D and folates in the past couple of years which the gp has supplemented, but I take the supplements on that list now, I just started to do that so no tests yet since then.