Fast symptom changes.

[Atlantic1]

Hi I have a question about hypothyroid symptoms. I was dx in Sept following RAI in July. Had TSH 87. Symptoms: fluid on face, brain fog, tired, dry skin, cold intolerance, muscle weakness etc

Treated well with levothyroxine 200mg and most symptoms disappeared. Then in Dec took a dip again TSH went from almost normal to 19. Increased Levo to 250. Was doing better again.

Two weeks ago had consult and bloods normal TSH 3.5, Free T4 20.4, Free T3 4.6 was feeling great. Better on good days than had been for years even pre hyperthyroid. Managing work etc all feeling good and ping more.

Then Sunday night my smell went off a little (symptom I had with onset and post covid last March never recovered but exacerbated by thyroid) and had been feeling more lethargic and tired. Monday morning had headaches, couldn’t tolerate light, slept for 24/30 hours (not like me usually sleep approx 8 and don’t na), groggy when awake, fluid on face /swollen again, dry skin, muscle weakness, tired etc. Like I had crashed out. still feel rubbish today with ongoing headache, tired, swollen face, skin changes etc

I seem to have got symptomatic very fast and this is second time. Tried to call consultant but can’t get thru. My questions 1) does anyone know anything about speed of symptoms onset/change. This change and symptom presentation feels sudden and dramatic each time

2) are these rapid fluctuations to be expected? Could they be due to diet or fluid or menstrual cycles

3) any suggestions what to do when experiencing them? The first two times I got bloods at gp but they don’t do whole range and I just not sure what to do. Took photos of face etc for next endocrine appointment but it’s not till March and feel really awful.

Any ideas / help would be great.

[MommaJ]

Sounds a bit like migraine issues; headache with light sensitivity and sleeping followed by brain fog and groggy.

[Atlantic1 in reply to MommaJ]

I did wonder this but as the day and today progresses it definitely feels more like the thyroid experiences I had. Esp the facial swelling.

[Batty1 in reply to Atlantic1]

Low thyroid can cause migraines. You should go do a private thyroid test and see if its thyroid or something else.

[SlowDragon Administrator]

Per previous post

healthunlocked.com/thyroidu...

Important to regularly test vitamin D, folate, ferritin

What vitamin supplements are you currently taking

As you have pernicious anaemia are you also taking daily vitamin B complex daily

Are you on strictly gluten free diet?

Or tried it

Strongly recommend getting FULL thyroid and vitamin testing....see what’s happening

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially after Graves’ disease

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Many people after RAI will need addition of small doses of T3 prescribed alongside levothyroxine

But before considering adding T3 it’s essential to get levothyroxine dose fine tuned and all four vitamins optimal

[Atlantic1 in reply to SlowDragon]

Thanks for the reply. All my vitamins and minerals were fine two weeks ago when checked which is why I’m wondering mostly about the speed of changes / symptoms. I take vid d, b complex, omega, iron, calcium and magnesium. I’m just trying to understand the rationale or mechanism as then I won’t find it so concerning if that makes sense. So is such a drastic change just something that can happen? I took your advice around testing in mornings so comply with that - thanks. I might have to try those alternative providers if I continue to struggle thanks for the links.

Not tried gluten free diet but did get teat for coeliac and it’s fine. Having a cortisol suppression test next week but again not been told that would explain what’s happening.

Thanks for taking time to help.

[SlowDragon Administrator in reply to Atlantic1]

Only 5% are coeliac, but that doesn’t mean you might not benefit from strictly gluten free diet

Something to consider

But at moment more urgent to get to bottom of wether you have low Ft3 and poor conversion of Ft4 to Ft3

Gluten free diet frequently helps gut heal

All my vitamins and minerals were fine two weeks ago when checked

Optimal vitamin levels are

Vitamin D at least 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

[pennyannie]

Hey there again

Sorry to read of this :

RAI is said to be a slow burn, it certainly was for me, though I've also read of other people feeling as though they were in some sort of " freefall " :

I think you need a full thyroid panel, and your doctor can, if he needs to run a T3 and T4 and I would think this a better option for everybody at this point time rather than you returning to the hospital.

I think I read you have experienced similar before which resolved with dose increase so is this what you plan on trying to get ?

I think it equally important to get your ferritin, folate, B12 and vitamin D measured as I read RAI trashes vitamins and minerals and this may have compounded this phase in your recovery, as no thyroid hormone replacement works well if these core strength vitamins and minerals are not maintained at optimal levels throughout the rest of your life.

[Atlantic1 in reply to pennyannie]

Thanks for the reply. And yea I did comment before. All my vitamins and minerals were fine two weeks ago when checked which is why I’m wondering mostly about the speed of changes / symptoms. Not sure I’m trying to get higher dose. I’m just trying to understand the rationale or mechanism as then I won’t find it so concerning if that makes sense. Thanks for taking time to help.

[pennyannie in reply to Atlantic1]

Yes, I get it, and understand you're just wanting someone to confirm that " it's happened to them " and give you some reassurance that it passes.

Your core strength of vitamins and minerals needs to be strong and solid :

I find I need to maintain my ferritin at around 100, folate at around 20, active B12 around 70+ ( serum B12 at around 500+ ) and vitamin D at around 100 for optimal T4 conversion to T3.

Sending a hug - as I don't know what else to suggest apart from asking to see your doctor and see if your T3 and T4 are at a good level for you.

[Atlantic1 in reply to pennyannie]

This is helpful. I’ll check what my vitamins were. Thanks for hug too. It’s just weird and a lot to get use to. I’ve been reading books and everyone has been helpful but a lot of s complex to understand and of course everyone is different.

[pennyannie in reply to Atlantic1]

Yes i know that feeling of being overwhelmed with it all, but stay with it, and us, as it does all sink in, with a bit of time and determination.

[Atlantic1]

It’s perhaps the facial swelling change that feels quite unsettling.

[PurpleNails Administrator in reply to Atlantic1]

Most feel well when TSH under 2 or nearer 1.

Always include ranges as they vary between labs. Then members can provide accurate interpretation but your Free T4 20.4 & Free T3 4.6 looks ok.

Symptoms tend do to develop gradually with thyroid but without frequent & full blood testing unexpected fluctuations can’t be excluded. Nutrients & diet could be affecting you too, again these tend to be gradual.

Given how suddenly you felt ill and the sleep & light sensitivity most likely a temporary type illness or migraine.

Is your facial swelling the entire face or more eye & cheek area? As although It’s unlikely (as other symptoms occurred at same time) you have Graves so related Eye disease is a possibility. RAI is known to worsen/trigger this and light sensitivity, puffiness, pain near eyes can all be signs.