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Autoimmune disease

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Thyroid levels how quickly can they change?

11 replies

ColourHex · 05/05/2022 12:46

Hi. Bit of background - I had joint pain around this time last year in my elbows, fingers and wrist as well as general tiredness. Doctor initially thought maybe Psoriatic Arthritis (long time psoriasis sufferer!) and referred to rheumatologist. Rheumatologist didn't think so as no big swelling and referred to Endocrinologist. Had bloods done in December and came back with borderline high TSH and high antibodies

TSH - 4.2 (0.27-4.2)
T3 - 4.5 (3.9-6.8)
T4 - 13.4 (11.0 -25.0)
Peroxidase Antibodies 205 (0-50)

He recommended retesting every year.

I was happy to go with that. Joint pain has never really fully gone (seems to come and go every few weeks - much worse around period) but its manageable.

The last couple of weeks I've started to feel really run down - I'm struggling to get up in the morning, I just feel sluggish. Thought maybe I've come down with something but remembered these results and wondered if things had maybe gotten worse? would seem very fast though - but I have no idea how quickly these things can change! so anyone who has had underactive thyroid have your results ever changed lots after 5 months?

OP posts:
Thatsajokeright · 06/05/2022 18:12

Your thyroid levels are pretty poor. I'd feel crap with levels like that. Absolutely go and get re-tested.

TSH is cyclical through the day and is highest first thing in the morning. Make sure you get a test as early as you can in the morning and keep all subsequent tests roughly the same time so your results are comparable.

With hashimotos you can/do flare. So you may be feeling worse because you're in a flare.

ColourHex · 10/05/2022 12:02

Thanks for your reply.

I didn't actually get to speak to the doctor after the blood results, only saw the recommendation to check yearly in a letter so was happy to go with that not knowing much about thyroid problems. But been reading up a bit more about it and can see that for some people these levels do cause problems so will try and follow up with regular GP.

OP posts:
DysonSphere · 11/05/2022 08:17

You are undermedicated your TSH is high and your FT4 is rubbish. No wonder you are starting to feel run down.

The range GPs tend to use means that if they are only looking at your TSH you will be pronounced well with a 'no action necessary' note once TSH gets anywhere below 5.

The range in the UK is diabolical and keeps many people ill. Note majority of those people are women as thyroid disease affects women more.

Your antibody levels could be lower, but aren't especially significant. With adequate levels of hormone it should lower, although they will always fluctuate.

You need a dose increase. Starting at 25mcg then retest in 4- 6 weeks then raise again. My private doctor would say your TSH needs to be around 1 certainly below 2.5. I have not met one private doctor or endocrinologist who finds anything higher than that acceptable.

With thyroid treatment the aim is to restore wellness and get rid of symptoms.

As regards cramps or joint pain, this is a classic hypothyroid symptom and is your body telling you need more hormone. Until then, if you are especially active or stressed you may find you get this reaction as you do not have sufficient T3 to pull on to replace what is is being used. You need good T4 levels to enable sufficient conversion to T3. Carry on and you will eventually not be able to compensate.

The aim of T4 therapy is a fully replacement dose, that your body needs not just dosing according the mid-range TSH number under 5.

When my TSH is at your levels, I cannot get out of bed or function. I have brain fog, cramps, terrible muscle pain, and usually skin problems too.

What nutritional supplements are you taking?

Thegroaninggurner · 09/06/2022 17:27

What nutritional supplements do you take if you don't mind me asking? I have Graves and was wondering what to take was thinking about the berrocco immuno.

DysonSphere · 10/06/2022 21:46

@Thegroaninggurner

Bad news, Ideally you want to take supplements separately and avoid multivitamins. Ideally.
Multivits jam all the vitamins together and some can prevent others from being absorbed. Iron in particular should be taken away from most other vits with exception of vitamin C. Multis also often use the cheapest version of the vitamins unless you pay more for a really good one and not enough of the minerals which need to be taken separately to get therapeutic doses. They often contain iodine as well which can be problematic but maybe less so for graves. This is what I have been told. That said I take multivits because 1. I'm not made of money and 2. I'm so forgetful

The cast iron essential supplements for those with graves hyperthyroidism or autoimmune hypothyroidism are:

Selenium 200 mcg daily (this helps with any inflammatory eye problems often associated with graves)

Vitamin D with added K2 (Low vit D associated with increased autoimmunity activity) take with fat containing meal.

Folate,
Iron (crucial, but should test your levels and ferritin levels first anything under 30 in either is bordering anaemia but one can be high and the other low so test first)
Pre-methylated B- Complex (I use Igennus, it has the most absorbable forms)
Magnesium - a good quality one, (not citrate, preferably something that calms the nervous system and aids sleep like bisglycinate or malate) when it comes to magnesium you genuinely do pay for what you get. You need decent doses.

Vitamin C high doses at very least 1000mg daily preferably not as ascorbic acid, as something like acerola cherry or camu camu, but in reality, I use both because I can't always buy the expensive stuff.

Zinc and Copper combined together because often as zinc increases copper decreases and vice versa - these help modify the immune system

Cod liver oil as opposed to generic omega 3, because cod liver oil contains naturally occuring
Vit A (check because sometimes they remove it) which is good for skin dryness and again the eyes.

Those are the everyday essentials. The top 6 are the very very essential.

I take all the above as separates when I can afford it, but it costs me a fortune. And I haven't been able to keep it up this year. I saw a private doctor once who told me having a thyroid condition is one of the most expensive conditions to have. Plus ideally you should test yourself at least twice a year for thyroid levels and folate, ferritin, vit D, iron, B12 and magnesium unless you can get your doctor to do test you and that costs more money.

My current doctor recommends Lamberts ADR multivitamins or Igennus Woman's multivits as an easier way to catch up on nutrients for the absent minded like me.

I actually don't like the Lamberts much, makes me feel revved up. Couldn't stick to taking them.

Looking at it, for the price range, the Berroca is quite good, I didn't realise they did this formula. It contains folic acid instead of folate and you'd probably have to take extra iron, and your magnesium separately, but for the price it does tick most of the essential boxes. I think I will buy some for days when I just want to take something, drink it down and forget about it.

Somatronic · 10/06/2022 21:56

I think you should get another test. My levels fluctuate pretty swiftly but I have a batshit thyroid so I need monthly bloods. Still, it might be worth you getting another test as it can easily be rectified with a low dose of levothyroxine.

I don't bother taking supplements. I find if the thyroid is well-managed I feel fine. I don't find it expensive as medical conditions go.

Thegroaninggurner · 10/06/2022 22:15

Somatronic · 10/06/2022 21:56

I think you should get another test. My levels fluctuate pretty swiftly but I have a batshit thyroid so I need monthly bloods. Still, it might be worth you getting another test as it can easily be rectified with a low dose of levothyroxine.

I don't bother taking supplements. I find if the thyroid is well-managed I feel fine. I don't find it expensive as medical conditions go.

I've only just got to the 3 monthly test after a year! I was on weekly for a while then two weekly for a while not long ago gone to monthly then 2 months and now 3 months, they were trying to get me to have Rai, they didn't think I would get the levels down but they came down. Hopefully will get down to 2.5mg soon.

Somatronic · 10/06/2022 22:30

@Thegroaninggurner that's with Graves disease yes? I have Graves and Hashimotos and honestly wouldn't wish Graves on my worst enemy. My endocrinologist was amazed when I managed to get it into remission (though it took two and a half long and frankly horrific years).

Then 2 years after remission I developed Hashimotos but I find that to be a walk in the park compared to Graves. My numbers kept deteriorating rapidly so I've been back to monthly tests for the past year or so, and now I'm pregnant so it'll be monthly for the foreseeable.

Thegroaninggurner · 11/06/2022 10:37

Somatronic · 10/06/2022 22:30

@Thegroaninggurner that's with Graves disease yes? I have Graves and Hashimotos and honestly wouldn't wish Graves on my worst enemy. My endocrinologist was amazed when I managed to get it into remission (though it took two and a half long and frankly horrific years).

Then 2 years after remission I developed Hashimotos but I find that to be a walk in the park compared to Graves. My numbers kept deteriorating rapidly so I've been back to monthly tests for the past year or so, and now I'm pregnant so it'll be monthly for the foreseeable.

Somatronic, so it is possible to go into remission when they think you won't? I had a thyroid storm last year and have a goitre, he told me I would have to have Rai as I couldn't stay on a high dose of carbimazole indefinitely and yet here I am down to 5mg and he's saying I may have to go down to 2.5mg even my gp was surprised I got down to 5mg.

When I spoke to the endo a few weeks ago I asked if it was brought on by the fact I had gone through a hellish time, anyway I couldn't understand what he said but I did manage to pick up not a chance of remission. But if they thought I wouldn't get down to such a low dose then the way I see it is there's a chance?

Somatronic · 11/06/2022 18:52

@Thegroaninggurner I was told I wasn't a candidate for remission because my bloods were absolutely bonkers but I responded well to neomercazole and over two and a half years I went down from 60mg a day to zero with negative antibodies. They told me they only went down that route because of Irish Medical Council guidelines (in women my age meds have to be tried for I think 18 months before RAI or thyroidectomy can be considered) but they said the thyroid would definitely have to be removed eventually.

If you are responding well to meds, which it sounds like you are, I don't see why you wouldn't have a chance at remission but I'm not a medical expert! 😉

Thegroaninggurner · 11/06/2022 20:04

Somatronic · 11/06/2022 18:52

@Thegroaninggurner I was told I wasn't a candidate for remission because my bloods were absolutely bonkers but I responded well to neomercazole and over two and a half years I went down from 60mg a day to zero with negative antibodies. They told me they only went down that route because of Irish Medical Council guidelines (in women my age meds have to be tried for I think 18 months before RAI or thyroidectomy can be considered) but they said the thyroid would definitely have to be removed eventually.

If you are responding well to meds, which it sounds like you are, I don't see why you wouldn't have a chance at remission but I'm not a medical expert! 😉

Thank you it's just good to know there is hope.

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