Scared something nasty is going on

[Janeylou69]

I'm worried about everything now ,I'm taking all the vitamins , on on 100 mg of levythyroxine ,I've lost weight ,I have digestive problems ,loose stools ,doctor got me to do a fit test which came back normal ,blood tests showed low folate,low ferritin, I'm already on vit d ,my periods have changed a bit , could all this be to do with my thyroid ,I don't know much about being hypothyroid. Thanks for any replies.

[humanbean]

Can I ask... What is a fit test?

[Buddy195 Administrator in reply to humanbean]

It’s a stool sample test ( Faecal Immunochemical Test) to detect quantity of blood in a single stool sample.

[Janeylou69 in reply to humanbean]

Yes it's what they use to look for bowel cancer

[SlowDragon Administrator]

Yes…..your TSH was far too high at 4.06

healthunlocked.com/thyroidu...

Your GP should have immediately increased your levothyroxine by 25mcg

How much levothyroxine are you currently taking

Which brand of levothyroxine are you currently taking

Have you had coeliac blood test done yet

Although most hypothyroid patients gain weight……Significant minority of hypothyroid patients seriously struggle to maintain weight unless optimally medicated

That’s TSH around 1, Ft4 and Ft3 at least 50% through range

Essential vitamin D, folate and ferritin levels are OPTIMAL

Low vitamins are directly linked to being under medicated on inadequate dose levothyroxine

[Janeylou69 in reply to SlowDragon]

Hi slow dragon thanks for your reply im taking 100mg of levythyroxine ,I'll look what brand it is ,I've had coeliac test done and it was negative ,my folate and ferritin are low ,I've lost weight ,I'm not in a good place at the moment x

[SlowDragon Administrator in reply to Janeylou69]

So now you have had coeliac test you can trial strictly gluten free diet

It’s easier than it sounds and frequently gives astonishing improvements

Spend a week or so thinking about what you would eat instead at each meal ….before diving in

Meanwhile working on improving low vitamin levels

Increasing iron rich foods in diet.

[Janeylou69 in reply to SlowDragon]

Hi slowdragon thanks foryour reply So I'm new to the gluten free foods what has to be gluten free and what's the best things I can try ,I know bread and pasta have to be gluten free ,I'm not sure about cereal x

[SlowDragon Administrator in reply to Janeylou69]

Gluten is a protein in all wheat, barley or rye grains

So you need to read all labels and not eat anything with wheat, barley or rye in

Oats are ok ….but you need certified gluten free oats (grown in a field that’s never grown wheat, barley or rye before and milled in gluten free mill)

Find GF oats in gluten free section at supermarket

Gluten hidden in loads of products…..but labelling is good these days

Eating out relatively easy. Take aways very difficult. Eating at friends or family…..can be tricky…..but generally if you explain people are keen to help

Coeliac U.K. has loads of info

coeliac.org.uk/home/

Lots of gluten free websites, recipes etc etc online

All gluten free found in “Free From” section in supermarket

Gluten free flour makes great cakes and puddings

Gluten free bread. Lots are dreadful.

Some are excellent.

Best (in my opinion) Waitrose brown seeded

Warburtons is good too

Most are ok toasted (get a separate cheap toaster just for your gluten free bread)

Gluten in beer and larger …..but these days loads of gluten free options….even in the pub

Lots of products are naturally gluten free

Lots of ready meals are also gluten free…..just check the labels

[Janeylou69 in reply to SlowDragon]

Thanks slowdragon ,I will look out for the gluten free section In the market ,I like oats so that's good for me, x

[DippyDame]

This should give you some helpful background info on hypothyroidism Janeylou69

thyroiduk.org/if-you-are-hy...

Your symptoms suggest undermedication

How is the gluten free diet going?

Did your GP increase your levo dose as SlowDragon advised earlier?

You may need to persist with this because your GP clearly has no idea about thyroid hormones if he says they don't test ft 3 and ft 4 ,they say its because there's no significance in testing it

thyroidpatients.ca/2021/07/...

FT4 and FT3 have huge significance... full stop!!

Particularly FT3

T3 is the active thyroid hormone and is essential to almost every cell in the body.

For good health the cells must have a constant and adequate supply of T3

Low cellular T3 = poor health

We also need to have labs for both Frees so that we can compare them to check for poor T4 to T3 conversion in the body

High FT4 with low FT3 = poor conversion

Poor conversion = low T3

If that is the case you may also need a little T3

So bah humbug to that GP!!

Unfortunately medics are now trained to monitor by TSH

It is a pituitary, not a thyroid, hormone

It shows whether the overall level of combined T4 and T3 in the blood is high, low or OK

But it does not show the levels of each hormone

High TSH = hypothyroidism or overmedication

Low TSH = hyperthyroidism or overmedication

And that is important

It a lazy and inaccurate way to monitor hypothyroidism which medics now consider to be the gold standard test...

Essential also to optimise vit D, vit B12 folate and ferritin to support thyroid function and T4 to T3 conversion.

[Janeylou69 in reply to DippyDame]

Hello dippydame thanks very much for all the information on all this ,I'm so tired and stressed and worried ,it's making life miserable, it feels like I'm stuck feeling this way for the rest of my life and agree my doctor hasn't done enough ,he basically gave me the medication and that was it ,no one explained to me what was going on or about hypothyroidism and I definately think they should test ft3 ft4 ,because I'm obviously not getting the right treatment , thank-you xx

[DippyDame in reply to Janeylou69]

Been there, it's really tough but with correct medication you will feel better

Many of us do private finger pick tests in order to get full resultsDiscounts are available on some tests

thyroiduk.org/help-and-supp...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Suggest you consider a full thyroid test, post the results here and members will advise on the way forward.

[Janeylou69 in reply to DippyDame]

OK thanks dippydame ,I shall try and speak to my doctor and tell him how I'm feeling ,and hopefully they will test my thyroid again x

[shaws Administrator in reply to Janeylou69]

You might find that few GPs are knowledgeable about how to diagnose/treat patients who are hypothyroid.

Mine couldn't even diagnose me when TSH was 100 and had phoned to tell me that I had no problems as my blood test was o.k.

[Janeylou69 in reply to shaws]

Hello Shaw thanks for your reply ,I think doctors should help more and know more about the thyroid, it's stressful x

[serenfach]

Just to say I completely understand - you are not well and the medical profession is not helping you like it should. Can you see another GP? You can ask for a "trial" of upping your Levo, just to see if it helps doc, as I feel so ill...

I lost 2 stone in 4 months for no apparent reason, but have read that many people found the same after the vax. I have also learned not to mention the vax to doctors or they tend to dismiss you.

Have you tried a live yoghurt to help your digestion? It might not do anything, but it is worth a try (and not expensive) just in case your gut bacteria are being silly.

We are here to support you. There is so much valuable info on this forum, it is worth browsing for a bit every day so you get the overall picture of thyroid problems.

Sending a hug.

[Janeylou69 in reply to serenfach]

Hi serenfach thanks very much for your help and support ,i feel like the doctors have just left me to it ,I feel rubbish everyday and worried ,it's taking a toll on me .

[Janeylou69 in reply to serenfach]

Hi serenfach there was another test I had done ,it's a stool test called a calprotectin test my results were high which they think I could have inflammatory disease or something else, I'm really worried ,do you know anything about this xx

[serenfach]

Not a lot, I am afraid, but I do know it tests the levels of white blood cells present in the stool sample. White blood cells fight infection, so if you levels were high, it indicates either a bacterial infection or IBD. I would think they would do further tests to see which it is, as bacteria can be got rid of by antibiotics and IBD can be treated using different drugs.

Having the wrong levels of thyroid hormones upsets the whole digestive system Under dosed =slow gut transit, overdosed = fast gut transit, putting it very simply. It could just be that your gut is telling you your hormone levels are out, and have been for a bit, so your gut is inflamed and complaining. Or you could just have picked up an infection. There is no real way of telling without further tests and I hope they offer these to you.

I know it can be scary and there is no point in telling you not to worry, but on the whole, the gut thing is not fatal, just a pain in the bum. Sorry, I hope I made you smile!

[Janeylou69 in reply to serenfach]

Thank-you for your reply ,yes that made me smile lol ,which I'm not doing a ,ilot of at the moment ,I think the doctors are baffled as to what is wrong with me coz the fit test came back normal ,blood tests were good apart from low vitamins and iron ,ferritin, so they want me to repeat the calprotectin test ,I've lost weight then gain a little back then lose the weight again , I'm just really worried that it's something nasty, it's too much ,I have kids to think about ,and I don't want it to be left in case there is something wrong ,I'm hoping it's just an infection or a little inflammation or something like that but let's see what happens next x

[serenfach]

We all jump to the "something nasty, and am I going to be here next year" thing. The medical profession dont seem to realise how wearing this is. Maybe it is because they know it hardly ever is that nasty.

I have health problems, new to me. I was sent to a hospital 50 miles away "rapid assessment clinic". At the end of the day they told me they did not know what was wrong, and sent me back to the same hospital for more tests a month later. They did not know either, so that is the end of that.

They have done lots of blood tests, including one for budgie and pigeon infections. But they would not do a Vit D test, or minerals... I dont have budgies or pigeons....

I hope you get it sorted soon. Next time you see a GP, try taking a male with you who can say to the doctor that they need to get it sorted. Surprising how much difference this makes.

Sending a hug.

[Janeylou69 in reply to serenfach]

Thanks for your reply , I hope you get somewhere with your health problems ,it's silly how they wouldn't test your vitamins ,coz they are just as important, I'm getting fed up now ,I feel awful everyday, how do you cope with it x

[serenfach]

I suppose by thinking "I am still here" and trying to enjoy the little things. A few months back, it was implied I did not have long - never said outright. So here I am raging against the dying of the light. And a sort of childish "if they cannot be bothered with me, I cannot be bothered with them" attitude. It helps me anyway.

[Janeylou69 in reply to serenfach]

That's a good way to look at it, I don't like thinking these negative thoughts but because there's so much going on ,it's what I end up doing but I will try and be more positive then negative and hopefully me and you will come out of this ok ,I hope you get some answers about what is going on with you x