Feeling confused - latest blood results - Thyroid UK

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Feeling confused - latest blood results

dizzy1979 profile image
36 Replies

Hi guys, I just got my blood results back, and I am ata a loss as to what to do. I take 2 tablets of thyroid s a day, 1 at 6.30 and 1 at 10pm. I have taken the same dose since March/April this year and yet my ft3 is increasing and my ft4 decreasing. The dr suggested halving my dose to 1 a day but that seems far too much. Any help and advice greatly appreciated.

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Localhero profile image
Localhero

Hi dizzy1979

How are feeling on this now?

dizzy1979 profile image
dizzy1979 in reply toLocalhero

Fat, tired and fed up! I am gaining weight, and have been for the past year, I have broken sleep again, and go from falling asleep on the sofa at 7pm to staying up all night feeling restless. I thought I may be perenopausal, as I tick a lot of those boxes, however I now think it’s just my messed up thyroid.

Localhero profile image
Localhero in reply todizzy1979

I hear you!

I assume you did your blood tests the way they’re generally recommended on the forum?

Your vitamin D looks low at 66, if I’m reading your page correctly. I normally try to keep mine over 100.

Have you done any adrenal testing at all?

dizzy1979 profile image
dizzy1979 in reply toLocalhero

I took my meds at 10pm the night before non the morning of testing, bloods drawn at 8am.I confess I have forgotten to take my Vit d in recent months. I have just ordered some more.

greygoose profile image
greygoose

Do you have Hashi's?

Not surprising if your FT4 goes down when taking T3, but surprised the FT3 is rising - unless you have Hashi's. :)

dizzy1979 profile image
dizzy1979 in reply togreygoose

Hi, I do have hashi’s.

greygoose profile image
greygoose in reply todizzy1979

Then you're probably having a Hashi's 'hyper' swing which has made your FT3 go over-range. Stop taking the T3 for a few days and see how you feel.

What you need to do is optimise your nutrients. Your vit D isn't even sufficient, let alone optimal. It should be more like 100.

And B12 should be at least over 550. But, you need to get your folate tested before supplementing.

You also need ferritin tested. Having suboptimal nutrients will mean that yor body cannot use thyroid hormone correctly. Plus the low nutrient levels will also be causing symptoms.

dizzy1979 profile image
dizzy1979 in reply togreygoose

Thank you, I have b12 injections, I have just had my 3 month dose today, my last was in July, so I expected the b12 to be lower on this test. I take thyroid s so unable to just stop t3, should I reduce my dosage by half a tablet a day? Or more for a few days/weeks?

I confess to having not replaced my vit d when it ran out hit have just ordered more so will start that again tomorrow.

greygoose profile image
greygoose in reply todizzy1979

OK, so you have B12 injections, that's good. But, do you also take a B complex every day to keep the Bs balanced, and act as a maintenance dose of B12?

Sorry, forgot you take Thyroid S. But, never reduce by more than 1/4 grain at a time - every two weeks if necessary. Yes, you could try reducing your NDT by 1/4 grain and see how you feel in two weeks.

When you take vit D, do you also take its cofactors: magnesium and vit K2-MK7?

dizzy1979 profile image
dizzy1979 in reply togreygoose

I stopped my b complex when I started the injections, but I can start them again. I just take the oral Vit d spray. I used to take magnesium Malate but think I stopped about 6 months ago when I moved house a misplaced a box with them in.

Looking at my results, if I reduce by 1/4 of a tablet, and then say in 2 weeks another 1/4 if a tablet, do you think it would send my ft4 too low?

I will start all my supplements again and stop the gluten ( really hard when working from home and the biscuit tin is your only company ) but I desperate to feel well again so will do what ever it takes to get there now.

greygoose profile image
greygoose in reply todizzy1979

Not a good idea to stop the B complex, because the Bs all work together and need to be kept balanced.

Very important to take magnesium with vit D because they work together, and you're probably low on magnesium to beging with - most people are, and being hypo will make it worse - so if you're not taking magnsium, the vit D will deplete your magnesium completely - and it can't work without it.

And, you need vit K2-MK7 because taking vit D increases absorption of calcium from food, and the K2 makes sure the extra calcium goes into the bones and teeth, and doesn't build up in the soft tissues. Is there any in your vit D spray?

Reducing your Thyroid S will reduce your FT4, of course, but whether it will be two low is impossible to say until you try it. Some people don't need much T4 when taking T3.

Have you tried gluten-free before? Did it help with your symptoms? Try replacing the biscuits with nuts, or roasted, salted chickpeas. Yum! :)

dizzy1979 profile image
dizzy1979 in reply togreygoose

Thank you so much, your advice is always so clear and calming!

I will start all of the above, the Vit d spray has k2, or I do have tablets that also have k2 that I have just found in the back of the cupboard, so will pop one of those today along with the magnesium, which will hopefully help with my restless legs of an evening.

I followed aip for 3 months and felt amazing, unfortunately I can’t seem to find the willpower to be that struck right now, but I will start with gluten free.

greygoose profile image
greygoose in reply todizzy1979

Yes, changing your diet can be challenging when you're feeling below par.

But, not a good idea to start all the supplements at the same time. Start one, and then wait a week or so to start the next one, just in case. :)

Wilfred123 profile image
Wilfred123 in reply togreygoose

Hello, could you recommend the K2-MK7, B complex and vit D that you take pls, where do you buy it from? Do you take them altogether as I know you shouldn't take some vits at same time as Levo etc.Many thanks.

greygoose profile image
greygoose in reply toWilfred123

I'm not the right person to recomment vit K2-MK7 or vit D, because I haven't taken either for a long time. But, the B complex I use - and think is the best - is Thorne Basic B.

You can take those three together, yes. What needs to be taken separately is iron and vit C - two hours away from everything else, four hours away from thyroid hormone.

Vit D should also be four hours away from thyroid hormone. But, you should be taking magnesium with it. Vit D and K2 need to be taken with some form of fat, like butter or cheese or olive oil, etc.

Never take magnesium and zinc at the same time, either. :)

Wilfred123 profile image
Wilfred123 in reply togreygoose

Wow I need to schedule my meds throughout the entire day...Will have write down what goes best when with what as I can never remember and end up not taking any. May I ask how come you no longer require D or K2 as of there's something else I could do rather than supplement that would be preferable! Apologies if thus is too nosy! Thankyou for advice will get your Thorne basic b!

greygoose profile image
greygoose in reply toWilfred123

I don't know that I don't need it because I can't get it tested. I just know that my major low Vit D symptom has gone - excessive head sweating - and I can't fit it into my present schedule, anyway. So, I haven't taken it for a while, and am concentrating rather on my iron and B vits. :)

Wilfred123 profile image
Wilfred123 in reply togreygoose

Ok, thankyou GG

greygoose profile image
greygoose in reply toWilfred123

You're welcome. :)

RoboTh profile image
RoboTh in reply toWilfred123

This is the one I use1000iu (25mcg) but it comes in different strengths x

Tablets
shaws profile image
shawsAdministrator in reply todizzy1979

Do you have pernicious anaemia?

dizzy1979 profile image
dizzy1979 in reply toshaws

I haven’t been diagnosed, but my iron levels are always low, I was anemic after having my first baby 25 years ago and was told I’d need to take iron tablets for the rest of my life, but was ok for many years, it’s just the last 5 that have been an issue really.

shaws profile image
shawsAdministrator in reply todizzy1979

Request doctor to test the 'intrinsic factor' that will confirm or not that you have pernicious anaemia. If you do have P.A. you will need regular B12 injections.

dizzy1979 profile image
dizzy1979 in reply togreygoose

Is there anything I can do ? I feel at a total loss. So fed up with never feeling good.

SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking

Vitamin D is too low

B12 is low

No folate or ferritin results

Do you have PCOS - you have high testosterone

As you have Hashimoto’s are you on absolutely strictly gluten free diet

If not, get coeliac blood test done BEFORE considering trial on strictly gluten free diet

dizzy1979 profile image
dizzy1979 in reply toSlowDragon

I do have b12 injections. I just had a dose today so those results were after 3 month after last injection. I used to take Vit f but that ran out a couple of months ago and I forgot to reorder, but have done due tomorrow.

SlowDragon profile image
SlowDragonAdministrator in reply todizzy1979

So you likely need B12 injections more frequently

You can request every 2 months

3 month interval is totally arbitrary

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels between injections too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Aiming to keep vitamin D at least around 80nmol and around 100nmol maybe better

Sparklingsunshine profile image
Sparklingsunshine in reply todizzy1979

Hi I have B12 injections and find the 3 month gap is too long. I asked the nurse at the surgery who gave my jab and she said there are a number of people like us and they can give them a bit more frequently, she suggested 10 weeks.

I never felt much benefit from my jabs before, but since becoming hypo last year I've become much ,more aware of when I need one. In between I use a B12 mouthspray.

dizzy1979 profile image
dizzy1979

I am not taking any other vitamins/supplements currently.

I have never been tested/treated for PCOS but I asked for tests because I suspected peri meno but I’m guessing my symptoms are due to thyroid being so out of whack?

I am not currently gluten free, I have been tested for celiac a few months ago as it was negative.

SlowDragon profile image
SlowDragonAdministrator in reply todizzy1979

Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s

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

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s 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 a further 80% find gluten free diet helps, sometimes 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

As your coeliac result is negative you can consider trialing strictly gluten free diet for 3-6 months.

Likely to see benefits. Can take many months for brain fog to lift. It’s ALWAYS worth trying gluten free

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Janleek profile image
Janleek in reply toSlowDragon

This is excellent information Slowdragon. You have explained it very clearly to a newbie here. JL

shaws profile image
shawsAdministrator

When NDTs were first given, from 1892 onwards, there were no blood tests at all. Patients were given NDTs and small increments were given until the symptoms resolved. So there's no need to worry about blood test results.

CoeliacMum1 profile image
CoeliacMum1

Regarding the B12 you say you have injections, I’d say this is still quite low then. I have injections and and my levels are still in high 600s when my next is due.

I do not take any other supplement just eat food rich in iron and B12 as I’ve had previous problems with iron and Ferritin.

My folate needed supplementing last year but fine now.

So maybe up that where you can in diet or supplement if have to.

Could be an absorption issue which I have as I have coeliac disease and pernicious anaemia with hypothyroidism/Hashimoto’s.

Think others have mentioned Vit D with vitamin K.

I’ve had good results with better you spray 3000 dose one with Vitamin K, very quickly saw increase in my levels in comparison to similar in tablet form which has to be broken down and absorbed which might not be very much.

Regarding the peri or premenopausal bit if your over 45 blood tests are not always an accurate way to tell, as these hormones rollercoaster are various points in the day never mind day to day, if younger than 45 there is always a risk of early onset of perimenopause or menopause.

Check out Dr Louise Newsons (menopause specialist) website think has now been renamed Balance, although there’s also the balance app for you to keep track of things.

Unfortunately it’s a nuisance that all these things arrive at similar time for women and mess everything up, just address what you know first, and if no joy, try looking at menopausal see if can help you feel better.

dizzy1979 profile image
dizzy1979 in reply toCoeliacMum1

Thank you. I am 42 next month. The symptoms of peri are very similar to thyroid being off, so I thought it was a shot in the dark, but the bloods were taken the day before my period was due and so it looks like it is the onset of peri as my estrogen is near the very bottom of the range?

Thanks for the info, I do have the better you Vit d and k spray due before, I used to take it and it is very good.

I am going to focus on getting my thyroid optimal ( or at least better ) hopefully making the peri symptoms better for now.

vocalEK profile image
vocalEK

Well I am confused. The lab says your Vitamin D is 66 nmol - "Normal - No action", yet the sufficiency range is > (over) 75. So they are saying that it is "normal" to have insufficient Vitamin D. That is probably true if "normal" does not mean "healthy", but rather it refers to the statistical average.

Vasiliki99 profile image
Vasiliki99

u got low TSH quite low T4 - u got T3 a bit high - but dont know what that means , hormone issues I got could try T4 at night

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