Thyroid or CFS

[siannie]

I’ve just been signed off work for another 4 weeks. Making a total of 8 weeks (unless I go back sooner ). My note states CFS, given my symptoms. My question is is there a fine line between the thyroid and MECFS.

I’m just concerned incase I’m undertreated (currently 50 Levo and 40 lio (t3). I was originally 2 years ago on 150 Levo.

I’m seeing my endo on the 31st and having bloods next week, which I will post results on here.

My current symptoms include

Exhaustion

Increased heart rate if not resting

Dizziness

Breathlessness

Brain fog

Vision disturbance

Headaches

Inability to process information

Struggling to put words in correct context

Etc etc .

I’m convinced they’re missing something.

Any ideas? I’m trying to pace not helped by hubby who I think is getting frustrated by my always ‘exhsusted’ mode. He has been incredibly supportive but just occasionally he slips !!

Any advice welcome.

[greygoose]

Well, as I said in your post 18 days ago. ME/CFS isn't really a diagnosis because doctors can just use it to cover any illness/symptoms they don't understand, and then ignore you. I call it a 'dustbin diagnosis'. And there's nothing to prove you have it and nothing to prove you don't. Whilst with thyroid, it's pretty obvious - if you understand thyroid, that is. But most doctors don't. It's a complete mystery to them! So, it's either Fibro, ME/CFS or depression. Handy boxes to shove you in and close the lid.

Your symptoms look - to me - like a mixture of hypo and nutrient deficiency symptoms. But what would a doctor know about either of those? Did you ever get your nutrients tested? I haven't seen any results. Once we've seen the results, we might be better able to help you.

[siannie in reply to greygoose]

Hi

Sorry memory useless so I forgot you had responded to a previous post.

Nutrients tested ? Do you mean like Vit b etc .

I’m having bloods next week

Vit b12 and folate

Calcium

Cortisol

Crp

Oestradol

ESR

ferritin

Free T3

Liver function

Thyroid function TSH

Vit D

Free t4 tsh

Hopefully these will shed some light.

I’m considering seeing a nutritionist as someone recommended a lady to me .

Any other suggestions gratefully received

And that’s again

[greygoose in reply to siannie]

Well, that sounds like a good list of tests.

Why do you think you need to see a nutritionist?

[siannie in reply to greygoose]

A friend suggested it - I think I’m grasping at straws, just want to feel better 😳

[shaws]

It is tiring for members of family who don't have hypothyroidism as it would seem that we, once diagnosed and given medication, should be feeling better - in fact we should be back to normal health.

We know it is very different. CFS and ME were named about ten years after the introduction of blood tests and levothyroxine as blood tests 'didn't fit' hypo.

Before that people were given NDT according to clinical symptoms which was raised until symptoms were relieved.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow 24 hours between last dose of levo and test. This lets our TSH be at its highest as it drops throughout the day and can mean the difference between getting an increased dose or a reduction. We also don't get the appropriate tests we need such as:-

TSH (the aim is below 1 or lower)

FT4 should be in the upper part of the range

FT3 the same as FT4.

You need a Full Thyroid Function Test which you can have privately through one of our two labs. They do home pin-prick blood tests and you have to be well hydrated before blood draw. I will give a link, just in case:

Blue Horizon and Medichecks are the labs.

thyroiduk.org.uk/tuk/testin...

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D, iron, ferritin and folate.

thyroiduk.org.uk/tuk/about_...

No-one who doesn't have hypo, can understand how bad we feel despite taking thyroid hormone replacements. Some people have a resistance to thyroid hormones and they would have to take T3 only and in bigger doses than one would normally take.

[rosetrees]

Have you considered that you might have an underlying infection as the cause of your problems? Many of these infections are the root cause of thyroid and adrenal dysfunction. I'm thinking of infections such as Lyme Disease, co-infections (bartonella, babesia, EBV, CMV etc). The NHS test for Lyme is useless - you'd need to order private testing.

Do you recall being bitten by a tick? (It is believed that it's not only ticks that carry Lyme, and many people have no recollection of a bite)

[siannie in reply to rosetrees]

I’m normally the mosquitoes main course.

Have had a few nasty bites up to 2016 but since then use incognito and rich wood just get the occasional one . The ones in the past always make the area swell up and puss up -ended up in the walk in a few times . I guess there’s a possibility I may have had an untreated infection. However I was admitted to hospital dec 16 and bombarded with anti biotics for poss bleed onthe brain, meningitis then kidney infection. Surely that would have killed anything ? That’s when all this started 😳

However will mention it to my endo at the end of the month - I’m sure he can arrange testing .

Thank you

[Angel_of_the_North]

I very much doubt that CFS actually exists as a specific illness - it is just a way for doctors to fob you off when they don't want or know how to help your thyroid and adrenal problems. There is no scientific proof that you have it and I would reject any diagnosis - it's just an excuse to ignore you.

[Hypopotamus]

I can't remember where now, but I recently read of a scientific investigation where they found a definite link between Rt3 levels and patients with ME/CFS. So yes, there is a link. And that would concur with my own health problems, diagnosed as ME, but getting much better after my hypothyroid was treated.