Is this my thyroid

[Janeylou69]

I'm hypothyroid ,I'm on 100mg of levo ,I've had loose bowels ,wight loss ,I've had a calprotectin test done twice and first time it was 467 and now it's gone down to 173 ,I'm sweating a lot ,very tired ,my doctor is keeping an eye on it but it seems like I'm getting nowhere, I'm on b12 injections every three months ,I'm worried about the sweating and weight loss ,what could be causing it ,I thought with hypothyroid you gain weight but is that the cause of my health deteriorating ,my last tsh was 2.78 which was 2 months ago ,I'm fed up with feeling this way ,thanks for any help .

[Lalatoot]

I lose weight when I am undermedicated hypo. On adequate levo dose we generally look for TSH of under 2 and nearer to 1 with ft4 over halfway through range.

[Janeylou69 in reply to Lalatoot]

Hello how much weight Do you lose ,its been going on a while for me ,my tsh has never been under 2 while I've been on levo xx

[Lalatoot in reply to Janeylou69]

Last time I lost 1,5 stones.

[Janeylou69 in reply to Lalatoot]

I would say that's quite a bit ,same here I've been losing on and off since this all started in 2018 but because i got pregnant with twins ,I gained weight but after that I started to lose weight again without even doing anything and now it's still going on ,it's worrying .

[Jazzw]

Have you ever been tested for SIBO? With your B12 deficiency too, I’m thinking it’s more than possible. Might be worth asking your doctor if you can be tested?

[Janeylou69 in reply to Jazzw]

Hello what is Sibo and no I've never been tested for it xx

[Jazzw in reply to Janeylou69]

Have a read of this:

thyroiduk.org/related-condi...

[Janeylou69 in reply to Jazzw]

I will definately read all this useful information thankyou .

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

Vitamin D deficient

How much vitamin D are you now taking

Iron/ferritin levels extremely low

You need FULL iron panel test every 3-4 months to see if iron is improving

Are you now on absolutely strictly gluten free diet

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

just testing TSH is completely inadequate

ALWAYS test thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

Currently on offer at 25% off

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[Janeylou69 in reply to SlowDragon]

Hi slowdragon I do need all my vitamins retested again ,my doctors don't seem to be keeping an eye on that ,I feel awful ,I've has all these investigations but I feel no better ,I'm drained ,I'm tired, it feels like I've lost muscle strength, as well ,I'm in pain all the time and it's worse when I use my arms and legs ,I could sleep any time of the day .

[SlowDragon Administrator in reply to Janeylou69]

You will need to self manage vitamin supplements

NHS only tests and treats vitamin deficiencies

Many hundreds of members on here have seen transformation on strictly gluten free diet and/or getting all four vitamins at OPTIMAL levels

[SlowDragon Administrator]

Are you vegetarian or vegan that you’re on B12 injections

Or do you have pernicious anaemia?

Are you taking a daily vitamin B complex as well

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 maintain 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 recommended vitamin B complex that contains folate, but they 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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

[Janeylou69 in reply to SlowDragon]

I had my thyroid peroxidase antibodies tested a few years ago and it was positive it was 118 ,does that mean i have hashimotos ,I'm not vegetarian but I don't eat a lot of meat .

[SlowDragon Administrator in reply to Janeylou69]

yes definitely Hashimoto’s

Strictly gluten free diet can be astonishing improvement

Always worth trying

Request testing for SIBO and H Pylori too

Optimal vitamin levels are essential

Look at increasing iron rich foods in diet

Red meat every day. Liver or liver pate once a week

Orange juice to help absorption of iron

[Janeylou69 in reply to SlowDragon]

I've been wondering while I feel so rubbish ,my doctor said that I didn't have hashimotos but I've been reading up online and coming on here and it looks like I have ,what can I eat if I'm not a red meat lover xx

[SlowDragon Administrator in reply to Janeylou69]

U.K. medics never call autoimmune thyroid disease Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Medics in U.K. generally completely ignore the autoimmune aspect of thyroid disease……then wonder why patients don’t recover

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

[Janeylou69 in reply to SlowDragon]

When I asked my doctor if mine was hashimotos she said no but I don't think she'd looked at my results from a couple of years ago coz she's not normally my doctor but I've seem her a few times recently so i do believe that I am hashimotos ,it's all so confusing.

[SlowDragon Administrator in reply to Janeylou69]

Most U.K. medics only call it autoimmune thyroid disease and then completely ignore the autoimmune aspect

High thyroid antibodies confirms autoimmune thyroid disease…..so yes ….rest of world would call it Hashimoto’s

[SlowDragon Administrator in reply to Janeylou69]

How long have you been taking iron supplements……if 3-4 months……Insist GP retest iron and ferritin see wether levels are improving

Are you been tested for peri menopause

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

you can hide liver in other dishes….curry….etc

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

It’s as much a disease of the gut as the thyroid

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

suggest you get FULL thyroid and vitamin testing done

Aiming for vitamin D at least over 80nmol

B12 at least over 500

Folate and ferritin at least half way through range

Strictly gluten free diet likely essential. Perhaps consider dairy free too in a few months (it’s not as difficult as it sounds)

[Janeylou69 in reply to SlowDragon]

I think my b12 is always low with the injections, my iron and ferritin always seem to be low as well ,I think it's coz of my diet coz I'm not a big red meat eater and now being hypothyroid as well ,and I've had low vit d before ,I'm suffering now for it thankyou for all this information .

[SlowDragon Administrator in reply to Janeylou69]

So you need to work hard on improving low vitamin levels to optimal levels

And continue supplementing to maintain at optimal levels

[Janeylou69 in reply to SlowDragon]

I definately do need to get my vitamins back up ,I never know what to eat ,I like veg ,I like fruit ,I'm not a big meat eater though .

[SlowDragon Administrator in reply to Janeylou69]

most members need to supplement vitamin D and B complex continuously

Might need separate B12 too

Possibly iron

But always get full iron panel test before and regularly if on iron supplements

[Regenallotment Ambassador]

bless you, you sound exhausted.

Just wanted to add that I followed the advice from SlowDragon on diet and ordered Medichecks blood tests myself, posted results here for the vitamins and got more advice. I also followed Izabella Wentz books Hashimoto’s protocol and gave up gluten and dairy.

Prior to this I thought my home grown veg and healthy diet would be enough but how wrong I was! I’ve done every conceivable self treatment for H pylori, SIBO, parasites etc and gone paleo too. It’s taken months but I am SO much better. Solid poos are now a part of my life most days (not all yet) work in progress!!

wishing you well, keep asking questions, the forum is such a friendly helpful place.

🦋💚🦋

[caledoniancat]

Hi Janeylou, your symptoms of weight loss, loose bowels, sweating, feeling awful, drained , tired, loss of muscle strength, constant pain and feeling you could sleep at any time of the day could be indicative of poor adrenal function and possibly autoimmune adrenal disease. If you have never had your cortisol levels tested it may be worthwhile asking for this.

[Janeylou69 in reply to caledoniancat]

Hi that sounds like something I will definately ask my doctor about thankyou .

[Janeylou69 in reply to caledoniancat]

Hi I also thought my symptoms were of something much more sinister ,I'm still not so sure coz of the weight loss ,I've been like this for a long time and it's concerning, the only things my doctor picked up in blood tests was anemia, low ferritin ,low vitamins ,normal fit test ,high calprotectin which went down xx