Anyone else have RA: What are your symptons of RA... - Thyroid UK

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Anyone else have RA

Pen1966 profile image

What are your symptons of RA or CFS as gp thinking of referring me to local CFS clinic

54 Replies
SlowDragon profile image
SlowDragonAdministrator

CFS is dustbin diagnosis

Request referral instead to recommended thyroid specialist endocrinologist

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

Some on list are NHS

…..you’re in Dorset?

Think there’s NHS endocrinologist on list in Southampton

Pen1966 profile image
Pen1966 in reply to SlowDragon

I have to be seen by endo at local hospital and have been refused by himself and gp Dr Richardson hes also on private one in my area

Pen1966 profile image
Pen1966 in reply to SlowDragon

I have no money to go private being ill has put me in debt have an IVA now and low income

BrynGlas profile image
BrynGlas in reply to SlowDragon

I have never heard of these in connection with hypothyroid. What exactly are they?

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Never heard of what in connection with thyroid?

CFS or RA?

Loads of thyroid Patients either under medicated or undiagnosed or poor conversion of Ft4 to Ft3 are mis diagnosed as CFS or fibromyalgia

Posts mentioning CFS

healthunlocked.com/search/p...

Posts mentioning fibromyalgia

healthunlocked.com/search/p...

Having one autoimmune disease makes others more likely ….so RA and thyroid often linked

Posts mentioning RA

healthunlocked.com/search/p...

Gluten free diet often helps both thyroid patients and RA patients

Kazania profile image
Kazania in reply to SlowDragon

‘dustbin diagnosis’ CFS, I agree. I had this diagnosis. Most unhelpful. A lot of years later diagnosed hypothyroid and PA

RhianR profile image
RhianR in reply to SlowDragon

Hi. Unfortunately Endocrinologists have never done anything to help me, let alone offer any compassion.....be they NHS or Private, and I'm Hypothyroid since 2011 - and been on Levo the entire time + T3 for the past year alongside Levo. Private prescription as NHS Endos continually refused over the years. Med doses have fluctuated but now on 75mg levo and only 10mg Liothyronine because of recent TF results. I have recently been told I've got the DI02 faulty gene (via Regenerus Labs test). Taking T3 alongside Levo has made no difference to my symptoms. Also, formally diagnosed with ME/CFS in 2019, although symptoms dated back to 2011 (and presumably GPs put it down to Hypothyroidism), although I'd felt ill since the birth of my son in 2004. I self-inject Hydroxicobalamin daily due to pernicious anaemia finally diagnosed by the only decent GP I've had in the past 11 years. And in 2020 I was privately diagnosed with Mercury Poisoning and heavy metal toxicity (Regenerus Hair Analysis Testing), and told by Functional Medicine Dr that likely caused from Vaccine damage (from mercury) as a child, and (mercury) Ammalgams too as a child. Now trying NBMI chelator on a very low dose. Had all Ammalgams removed in 2021 by a Biological dentist. Nothing has improved my symptoms and (after having lived a very full life & high pressure professional career for 27 years which is all now all lost), I'm sadly predominantly housebound and bedbound since 2018. I follow all the advice out there regarding diet, nutrition, sleep and take big dose Supplements twice daily (incl 10k VD3 daily) on Functional Med Dr advice etc, but still waiting for a miracle. She follows Dr Sarah Myhill protocols. Finally referred to my local ME/CFS Service by new GP after only 11 years of symptoms haha ......but there's nothing they can tell me that I didn't already know from other sufferers or FMDr/Dr Myhill.....and I know all about the Hypo connection.....although know some people with an ME/CFS diagnosis who do not have Hypothyroidism.....but then we all know how difficult getting this can be on the NHS because of what they classify as a 'normal' TF results!! Very messy. No light. Recent Serum Folate result was 15.6 and Serum Ferritin was 59 Ug/l, with my Serum Iron at 14.0 umo/l. No energy & have to lie down pretty much 247 as a result. Used to run, gym etc full on life with family & career before getting so sick. This is not normal but it seems neither conventional or unconventional medicine can help. Any other ideas/suggestions always welcomed 🙏 thx 🙂

SlowDragon profile image
SlowDragonAdministrator in reply to RhianR

Presumably you have autoimmune thyroid disease

Are you on strictly gluten free diet or dairy free diet

What are your most recent thyroid results

75mcg levothyroxine and 10mcg T3 isn’t much

Do you always get same brand levothyroxine at each prescription and same brand T3

Always test thyroid levels early morning, before 9am

Last dose levothyroxine 24 hours before test

Do you normally split your T3 as 2 x 5mcg

Day before test always split T3 into 2 or 3 smaller doses….taking last 5mcg dose approx 8-12 hours before test

Serum Folate result was 15.6

Serum Ferritin was 59 Ug/l,

Serum Iron at 14.0 umo/l.

Please add ranges on these results

RhianR profile image
RhianR in reply to SlowDragon

Hi, thanks v much for your reply and I'll reply in full when I have more energy. Later on today hopefully 🙏

SlowDragon profile image
SlowDragonAdministrator in reply to RhianR

Suggest you start your own new post

SlowDragon profile image
SlowDragonAdministrator

581 prescriptions in Dorset in last year Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

Pen1966 profile image
Pen1966 in reply to SlowDragon

I cant take these aches and quality of life for much longer

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

You only stopped HRT few days ago

Get TSH, Ft4 and Ft3 tested after 6-8 weeks off HRT

Which brand of levothyroxine are you currently taking

Do you always get same brand

Presumably you are working on improving very low folate and borderline ferritin as detailed in replies by SeasideSusie

healthunlocked.com/thyroidu...

Meanwhile trial strictly gluten free diet (can reduce bone/joint pain)

Pen1966 profile image
Pen1966 in reply to SlowDragon

Always had accord levo and am already gluten free had started higher supplements of B12 folate and ferratin and vit d and vit c. Someone sent me 100 25mg tablets of tiromel to try to help but I haven't taken 😕

SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

If starting on T3 ….need to do so SLOWLY

Obviously need to ensure you have ongoing supply T3

Cut 25mcg tablet into 1/4’s

Starting with 1/4 tablet waking

Wait at least a week before considering adding a second 1/4 of tablet approx 10-12 hours later

Hold at that dose

Retest in 6-8 weeks.

Last 1/4 tablet of T3 approx 8-12 hours before test

Monitor My Health Is cheapest at £26.10

Pen1966 profile image
Pen1966 in reply to SlowDragon

Thank you my whole life is on hold atm I am so fatigued all the time aches etc go to bed and wake up as tired as when I went to bed

shaws profile image
shawsAdministrator in reply to Pen1966

SlowDragon has given good advice and it will be worth a trial of T3 and you already have some.

When you state you have R.A. I assume that means Rheumatoid Arthritis? If so ask to be referred to a rheumatologist at a local hospital. If your GP doesn't agree tell him/her you will have to visit your local M.P. (member of parliament) to complain.

Pen1966 profile image
Pen1966 in reply to shaws

Gp says my aches in ankles joint wrist joints and legs could be RA or CFS thats why I was asking what other symptons people have with it im so grateful for all your help x

shaws profile image
shawsAdministrator in reply to Pen1966

I hope you do not have Rheumatoid Arthritis as my daughter has this condition and you need good doctors/specialists who can diagnose/advise/treat optimally the disabling symptoms you can develop.

Pen1966 profile image
Pen1966 in reply to shaws

Tests

Tests
SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

So GP has to test

Full iron panel test including ferritin

Coeliac blood test

B12, folate and vitamin D

Come back with new post once you get results

These all need to be OPTIMAL for good conversion of Ft4 to Ft3

Get a four vitamins tested and improved to optimal before getting thyroid including Ft3 test yourself

Most important results are TSH, Ft4 and Ft3 tested together

Monitor My Health Is cheapest at £26

Pen1966 profile image
Pen1966 in reply to SlowDragon

Total white blood count 5.7 10*9/L [4.0 - 10.0]Haemoglobin concentration 112 g/L [120.0 - 150.0]

Below low reference limit

Platelet count - observation 325 10*9/L [150.0 - 410.0]

Red blood cell count 3.73 10*12/L [3.8 - 4.8]

Below low reference limit

Haematocrit 0.33 L/L [0.36 - 0.46]

Below low reference limit

Mean cell volume 88 fL [83.0 - 101.0]

Mean cell haemoglobin level 30.0 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 340 g/L [315.0 - 345.0]

Red blood cell distribution width 14.4 % [11.6 - 14.0]

Above high reference limit

Neutrophil count 3.4 10*9/L [2.0 - 7.0]

Lymphocyte count 1.5 10*9/L [1.0 - 3.0]

Monocyte count - observation 0.5 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.2 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

Nucleated red blood cell count 0.00 10*9/L

General Information

Service Type: New

Status: Unspecified

Provider Report ID: 20220511145240750_0

Report Date: 11 May 2022

Message Recipient

GP Practice

Position: Healthcare Organisation

B12 452ng/L range 197.0 to 771.0

Vit D 132.0 nmol

Serum ferritin 52 ugl range 13 to 150

Serum folate 4.4ugl range 2.1 to 26.8

SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

Haemoglobin concentration 112 g/L [120.0 - 150.0]

Below low reference limit

Suggests either anaemia or low B12

my.clevelandclinic.org/heal...

Red blood cell count 3.73 10*12/L [3.8 - 4.8]

Below low reference limit

nhs.uk/conditions/red-blood...

A low RBC count could also indicate a vitamin B6, B12 or folate deficiency.

Haematocrit 0.33 L/L [0.36 - 0.46]

Below low reference limit

Also suggests anaemia

medicalnewstoday.com/articl...

Red blood cell distribution width 14.4 % [11.6 - 14.0]

Above high reference limit

Again suggests anaemia

healthline.com/health/rdw-b...

Vit D 132.0 nmol

Serum ferritin 52 ugl range 13 to 150

Serum folate 4.4ugl range 2.1 to 26.8

B12 452ng/L range 197.0 to 771.0

Folate, ferritin and B12 all too low

What vitamin supplements are you currently taking

Low B12 and low folate

supplementing 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 too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

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...

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...

Paradoxical B12 deficiency

b12oils.com/paradoxical.htm...

SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

Ferritin is too low

Look at increasing iron rich foods in your 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

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

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...

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...

Pen1966 profile image
Pen1966 in reply to Pen1966

Full blood countTotal white blood count 5.7 10*9/L [4.0 - 10.0]

Haemoglobin concentration 112 g/L [120.0 - 150.0]

Below low reference limit

Platelet count - observation 325 10*9/L [150.0 - 410.0]

Red blood cell count 3.73 10*12/L [3.8 - 4.8]

Below low reference limit

Haematocrit 0.33 L/L [0.36 - 0.46]

Below low reference limit

Mean cell volume 88 fL [83.0 - 101.0]

Mean cell haemoglobin level 30.0 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 340 g/L [315.0 - 345.0]

Red blood cell distribution width 14.4 % [11.6 - 14.0]

Above high reference limit

Neutrophil count 3.4 10*9/L [2.0 - 7.0]

Lymphocyte count 1.5 10*9/L [1.0 - 3.0]

Monocyte count - observation 0.5 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.2 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

Nucleated red blood cell count 0.00 10*9/L

General Information

Service Type: New

Status: Unspecified

Provider Report ID: 20220511145240750_0

Report Date: 11 May 2022

Message Recipient

GP Practice

Position: Healthcare Organisation

Ordering Party

Stebbings

Pen1966 profile image
Pen1966 in reply to Pen1966

Vits

Vits
SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

Rather than just taking folic acid

supplementing 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 too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

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...

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

Pen1966 profile image
Pen1966 in reply to SlowDragon

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

Many people find iron spray or drops are pretty ineffectual at improving iron levels

Recommend reading the many posts and replies by humanbean on iron and ferritin

Look at increasing iron rich foods in diet

Are you vegetarian or vegan?

Pen1966 profile image
Pen1966 in reply to SlowDragon

I'm veggie

SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

Then as vegetarian you’re going to need ongoing daily B12 as well as vitamin B complex

Iron is extremely difficult to maintain on plant based diet but especially if also hypothyroid

Ongoing iron supplements likely necessary

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...

Pen1966 profile image
Pen1966 in reply to SlowDragon

Thank you im taking a b12 spray

SlowDragon profile image
SlowDragonAdministrator in reply to Pen1966

B12 452ng/L range 197.0 to 771.0

Serum folate 4.4ugl range 2.1 to 26.8

B12 needs to be over 500

You also need vitamin B complex as well to keep all B vitamins in balance and improve very low folate levels

Week before all blood tests stop vitamin B complex as biotin in B complex can falsely affect test results

That week instead just take B12 and a separate methyl folate (eg Jarrow 400mcg)

Pen1966 profile image
Pen1966 in reply to SlowDragon

Thank you x

birkie profile image
birkie in reply to Pen1966

Hi pen1966❤️

Sorry to hear your struggling 🌹I have cfs, fibro, ME.. The cfs part is just what it says its chronic fatigue, the joint pain which I have also was put down to fibromyalgia, I also have ostio arthritis, your gp should be sending you for tests on your joints, I had another test in 2020 on my ankle and knee joints it turns out I now have calcification in my joints also, unfortunately with the nhs today we have to push for everything 😠 say you need an investigation in to your joint pain before you see the chronic fatigue clinic... Good luck.. 🌹🌹

Pen1966 profile image
Pen1966 in reply to birkie

Thank you will ask gp for help

CFS & Fibro = often means GP is being lazy &/or incompetent IMO. My Internationally experienced GP told me is Asia that I had Fibromyalgia and not treatable.... only painkillers & antidepressants. When my FT3 got to 60% thru the range... my joint aches, pains & sinus issues all went after being at that level over 6 weeks. I had to have 5 pillows wedged around me to try eleviate the hip & lower back pain in order to sleep.

Pen1966 profile image
Pen1966 in reply to Cola4444

Thats not good

Hi there, I have RA and ME/CFS. The main symptom they have in common for me is fatigue but there are a lot of distinctions as well that your GP could be investigating if you have other symptoms. RA is characterised by joint pain, swelling, stiffness and heat cause by inflammation and often (though not always) starts in smaller joints like the fingers. Preliminary tests include rheumatoid factor, anti-CCP and CRP which can be done in primary care if RA is suspected (or to rule it out). What symptoms are you dealing with at the moment? Do you feel they fit better with RA or CFS?

I have joint pain all day and legs feel like I'm walking through mud also tired 24/7

ps - in my case i believe Hypothyroidism caused over range calcium & uric acid which can also plague joints. These both fell back in range after my TSH fell below 1 & my FT3 about 60% thru the range.

Hi. I hope this info + attached diagram helps you. I have a Formal diagnosis of ME/CFS, and for the past 4 years I've been predominantly housebound and bedbound i.e 'severe' classification. I was diagnosed with Hypothyroidism/Underactive Thyroid in 2011. Since then I've been diagnosed with Hashimotos. Many MECFS sufferers are often Hypothyroid too, and IMHO due to poorly managed Hypothyroidism, they develop ME/CFS as in my case. Unfortunately I became very ill (& have lost everything) due to medical negligence by the NHS as I'll go onto explain. So, I've been ill with ME/CFS since 2011, although there were definitely signs of it as early as 2004. I kept pushing my body because of getting no support from GPs, who continually gaslit me for years, and consequently I became 'severe' ME/CFS category as a result of their negligence. I'm in constant pain too which is part of the illness + Fibromalgia, but it could be RA too. My referral to an RA Specialist in c. 2016 was 'cancelled' by the NHS with no good reason years ago, but if you read on you'll see why!!!!

My terrible experience is that anyone diagnosed with ME/CFS is typically lumped in an 'untreatable pile' and they (i.e GPs) do nothing. I sincerely hope you'll fare far better than myself, as I'm guessing you've not been sick for as long as me judging from your post - and you say your GP is thinking of referring you to an MECFS Service which is positive. My advice to you is that if you have all or most of the attached symptoms you must 'insist' they refer you, or you could be left in the "do nothing, she/he is imagining it" GP pile as I was for 11 years. Personally I have been treated extremely badly and like crap by the NHS, and through hearing other sufferers stories on ME/CFS Groups (on FB etc), mine is sadly not an isolated occurance. How has this happened to me you may ask? It's unbelievable tbh. So in 2020 I discovered that way back in 2012 a GP at my old practice had written "CFS" on my Medical Record, BUT they didn't tell me about that or offer any support. Unbelievable right!!! I had first reported feeling ill to my GP in 2011. I was feeling so unwell with symptoms as I'd always been very fit and healthy up to then.... although looking back i was always extremely tired after my Son was born in 2004, but i put this down to having a family, an abusive husband (now ex), along with a full-time Profession which had me working 70 hour weeks since i left University = a horrific level of pressure 247. Anyway, repeated visits to other GPs to seek help between 2012 and 2019 brought no help, and no referral to the local ME/CFS Service which is 2 miles away!!! Put simply I was completely ignored by the NHS. Sadly I then fell severely ill with ME/CFS in 2018, and knowing how useless the GPs were, I had to be taken to see a Private Specialist in London (and I'm in Manchester, so imagine how terrible that journey was for me) to obtain a Formal Diagnosis of ME/CFS, which was sent by him with instructions for care to my next useless GP. But STILL they offered no help or support let alone a referral to the local ME/CFS Service.....even after that!!! I moved GP Practices in Dec 2020 because I discovered that the one at the time lied to me about not being able to refer me, when the truth was that they didn't want to pay for the referral because their practice was out of area to the ME/CFS Service 2 miles away based on how the stupid Trust Regions are carved up in the UK. Having begged to move to a GP who was in the Trust Region for the MECFS Service in my area, I was finally referred after being ill for 11 years!!!! And reporting symptoms for all that time!!! But even then I had to really push hard to be referred when 'in area'. It's an absolute disgrace how I was treated - and how ME/CFS sufferers are typically treated by 'the system'. What's extremely upsetting is that people with 'long covid' are now referred within 3 months, and yet I had to wait 11 YEARS from first reporting symptoms in 2011 to a GP. Ironically the ME/CFS Service with whom I've now had 2 appointments with cannot tell me anything I don't already know, because I've had to find out for myself with no help or support, let alone any compassion from the NHS. An animal gets more help, support and compassion from a Vet and people generally (& don't get me started on how badly many of my so called family & friends have treated me - and my Employers before i had to stop due to being bedbound and housebound) + the vile State/DWP have treated me these past 13 years!). It is very hard not to be angry and bitter about my terrible experience, but it is all energy depleting so i have had to try to put it to bed. Good luck with your situation and I hope you can get better. Do push your GP hard for the help you deserve 🙂

p.s if you haven't already got it, I'd recommend you to get Dr Sarah Myhills book: 'ME/CFS - it's Mitochondria not Hypochondria'. And join her FB Groups. Also, try to find a Functional Medicine Doctor for help, although unfortunately they're all Private. Conventional medicined i.e GPs/NHS do not understand this illness or try to, let alone offer what sufferers need.

Symptoms of ME/CFS
Pen1966 profile image
Pen1966 in reply to RhianR

Thank you that covers alot of what I have

Pen1966 profile image
Pen1966 in reply to RhianR

How do you cope?

RhianR profile image
RhianR in reply to Pen1966

I don't! Long story. Take 1 day at a time. Hold on for my Son. Good luck with your situation x P.s my Mums 79 year old friend has RA and is in a lot of pain... and yet she still goes out 7 days a week. In sharp contrast I am still young in comparison but confined to my home and predominantly to my bed due to this horrific illness. And still the majority of people are so cruel about ME/CFS sufferers, and continue to gaslight us and tell us its in our minds. As if anyone would choose this life!?! They would not and do not.

Pen1966 profile image
Pen1966 in reply to RhianR

Thinking of you

RhianR profile image
RhianR in reply to Pen1966

Thanku so much & same to you 😊 Take care!

"GP says my aches in ankles joint wrist joints and legs could be RA or CFS... "

Do you mean RA ~Rheumatoid Arthritis ..... or just 'normal' osteo-arthritis ?

RA is an autoimmune disease and there are specific tests for it ... so if GP thinks it might be RA he should presumably have done these tests . i don't know much about it cos i don't have RA, but virtualreality's reply above lists the investigation that GP should do to rule it out.

Pen1966 profile image
Pen1966 in reply to tattybogle

I'm pushing for tests and answers atm

tattybogle profile image
tattybogle in reply to Pen1966

ok .

(i was writing a short reply , but it seems to have turned into War and Peace , and it's quite depressing .. sorry :) )

...... just so you are prepared for what a CFS/ME referral may give you ..... unless they have improved a lot since i was referred to a CFS/ME service... there's not a lot they can do when you get there other than:

Variations on the theme of CBT ~ (a sort of counselling which largely focuses on the idea that you are keeping yourself unwell by believing you have a disease, and are frightened of doing any exercise because you believe it will make you worse ... which can obviously be rather insulting if that's not the case for you )

And if you're lucky ~teaching you how to pace your energy usage ~so you don't keep doing 'boom and bust' in a repeat cycle .

Oh .. and they gave me a massive book.. full of pseudo-science to explain why "everyone will loose stamina and become de-conditioned if they lie down all day, and how everyone will get better if they just increase their exercise carefully and gradually ,and just stop telling themselves exercise is a problem "... but it was deliberately couched in scientific language so that most people wouldn't realise that's all it's really saying, and would believe their physical problems were being taken seriously .. when in truth, most of the CFS /ME 'treatment' is based on it being 'self perpetuated deconditioning, as a result of your own negative attitudes to illness /recovery / exercise"

They are not likely to be remotely interested in anything 'medical' that might be going on with you ..... I had already had a diagnosis of autoimmune hypothyroidism 3 or 4 years before my referral to them , and i was already 'treated' for that , my 'treated' TSH result and fT4 result were reported to them on my referral form from the GP, but other than that, my autoimmune hypothyroidism, and my treatment for it, was not mentioned once in over 2 years of appointments with the CFS/ME service . They would have had no idea if my thyroid condition / treatment had any impact on anything, and they did not ask if i'd been offered a trial of T3 when levo alone didn't restore my function.

There were some aspects of it that were helpful (learning to pace myself ,and accepting that i needed to do little and often , and things to promote better sleep) ... but mostly, the experience was more mentally damaging than anything else ... i had waited 2 and a half years on a waiting list to see them , thinking it would be some investigation into the physical difficulties i had ... but once i read through the book they had given me at the first appointment , it was obvious that no investigation would be done , and that their basis of treatment for CFS/ME was that even thought the initial problem was probably caused by something physical, eg a virus etc .. the fact that it continued, and didn't get better , was now a 'psychological /attitude/ unrealistic expectations/ dissatisfaction with my life' problem .

I was extremely angry when i realised that was all they had to offer ... because it wasn't the case for me ...and i really didn't appreciate the underhand way they tried to present it as though they accepted it was a medical/ physical condition purely so that people wouldn't notice they were really treating it as a mainly psychological problem.

I would hope that in the light of so many cases of long covid, that over time they may become more focussed and interested on real physical investigations and current research , rather than the purely psychological approach .... but i doubt they have had time to move forward on this to any useful degree yet. Most of the CFS/ME clinics were effectively 'closed' a few years ago.. some may have re-opened/ been re-named in the light of the huge umbers of 'long-covid' patients.. so do keep an open mind .. you never know they may have something better to offer than what i got. But many who work in that field are still very firmly wedded to the idea that "it's all in our heads ,and we'll get better if only we are committed enough and stop believing we have a disease"

RhianR What happened at your first 2 appointments? i'm curious what their attitude is nowadays .

Pen1966 profile image
Pen1966 in reply to tattybogle

Vits I started

Starting all this

Check out Eileen Laird at phoenixhelix.com/.

She had RA so bad she was bedbound. She's completely in remission by doing the AIP diet ( autoimmune protocol) and of course some supplements to boost her vitamins and minerals that she was lacking. She is now on the Paleo diet and doing great.

I can personally vouch for this diet and lifestyle, because I'm also in remission from Hashimoto's because of it. I call it a LIVE. IT instead of a DIE. IT Because it literally gave me my life back!

Pen1966 profile image
Pen1966 in reply to JannSimpson

Thank you will take a look but if its a huge cost I won't be able to do as not working

Thank you I am vegetarian so do not eat meat or fish so hard to follow protocols have no thyroid either

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