Thyroid UK
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Diagnosed me/cfs 20years ago now think it’s autoimmune after symptoms and pos ana?

Hi everyone I’m new in here

Have really been ill since teens and now I’m in my 50s. Long periods very ill with what I can only describe as something attacking my whole body! Then long periods of normality. Tick a lot of the boxes for lupus etc and have always doubted the m.e. diagnosis. Didn’t even really know about lupus until now and have never had any autoimmune tests till now with the pos ana. Just wondering if anyone else on here has been misdiagnosed with m.e. And found out it was autoimmune?I’m male by the way not that that makes any difference.

Many thanks and look forward to your views. Beau

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Have you been diagnosed with thyroid disease or thyroid antibodies?

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Hi Nanaedake.

Yes have subclinical hypo but haven’t had antibodies test. I got the ana done myself

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Would it be worth getting thyroid antibodies test done? TPO and TgAb to rule out thyroid autoimmune disease?

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Having real probs with gp seems to know nothing about thyroid. I know thyroid is very complex after reading on here. I know antibodies can drop if had for a long time. Will def try and get antibodies done. What is TbAb? Thanks for your reply it’s much appreciated x

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Ooops TgAb Thyroblobulin antibodies, my typo, I'll change it now.

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We have two private labs which will do the tests for you and I'll give a link just in case:-

Blue Horizon and Medichecks do postal pin-prick blood tests and you'd have to be well hydrated a couple of days before and warm hands before blood draw.

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

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What is ana test?

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ANA = anti-nuclear antibodies

How is it used?

The test is used predominantly to help diagnose systemic lupus erythematosus (SLE) and drug-induced SLE-like syndrome but may also be positive in cases of scleroderma, Sjögren’s syndrome, Raynaud’s disease, juvenile chronic arthritis, rheumatoid arthritis, antiphospholipid antibody syndrome, autoimmune hepatitis, polymyositis and many other autoimmune and non-autoimmune diseases.

Because the ANA test result may be positive in a number of these other diseases SLE, commonly known as lupus, can be tricky to diagnose correctly and additional tests may be used to help. These tests called ENA and dsDNA tests are used in conjunction with patient symptoms and clinical history to rule out a diagnosis of other autoimmune diseases.

labtestsonline.org.uk/under...

Many abbreviations that are posted here are in my document:

dropbox.com/s/og3lmxa1dqadb...

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Thanks. Sorry for late reply, I've only just seen. Where do they do the tests? Can you get them on the NHS? Or do you have to do it privately if they have no reason to give you one on NHS?

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FoggyMoggy,

Really I know little - they can be done on NHS but no idea what basis.

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OK thanks

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I hope you get answers from knowledgeable people on this forum. I wish you all the best. Gg

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Hi,

You are probably going to have to pay to get thyroid antibodies tested yourself as most GPs know nothing about them. It is also worth joining the lupus society on healthunlocked and interacting with them over what tests and treatment you should be seeking.

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Hello Beau66

I have felt unwell since May 1977 tiredness brain and muscle tiredness which came over me very suddenly. Did not get a diagnosis until 20 years ago that I had ME/CFS doubted the diagnosis because exercise did not flatten my batteries.I have letter stating I definitely have CFS based on clinical judgement rather than any specific blood test. Invited onto a trial at hospital in Liverpool 20 years ago using various treatments none of them worked . All the results from all the volunteers submitted to Lpl University answer it is definitely psychological. Five years ago NHS said that I do not have ME/CFS criteria has changed.

The way I feel it is definitely not psychological- Thyroid treated in 1994 became overactive with RAI but this made me worse. I am absolutely convinced it is all to do with the thyroid and auto immune system.

My doctor says all elements of thyroid within the range. He told me whilst training all students were told not to take any notice of remedies or explanations as to possible causes of illnesses unless it has been proven by university research. He has never heard of Thyroid UK and will not take any notice of them .

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This is a previous post. I suggest you get a Full Thyroid Blood test, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

healthunlocked.com/thyroidu...

I think everyone who has their thyroid gland knocked out should at the very least be given a combination of T4/T3.

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Hello Shaws

Thank you for your reply

I came across this website 10 days ago and I have found it very helpful

I have already submitted the history of my case going back 40 years together with blood test results done by NHS labs and because of a very blinkered view by my GP that the NHS has all the answers I decided to have the tests you suggest last Monday done by Medichecks .

The results have been posted on here and I have already received a reply from you.

The doctor from Medichecks says the TSH T3 and T4 are all within the ranges

TSH 2.24 Free Thyroxine 13.3 Total thyuroxine 75 range 59 to 154 Free T3 4.49 range 3.10 to 6.00 .

The thyroglobulin antibodies are positive. 198 range 0.00 to 150. He says this can be associated with autoimmune thyroid disease and in particular Hashimotos disease. From what I have read with Hashimotos the TSH T4 and T3 will show within the ranges.

He says everything else is normal thyroid peroxidase, vit B12 , folate

Vit D bordering on insufficient. He recommends supplementing with 400-800 iu

CRP level is normal. Also ferritin is normal.

My conclusion is the doctor has exactly the same level of conversation as the NHS over the last 40 yrs.

Action taken based on suggestions from posts on this website but the decision is mine alone and increased Thyroxine from 75 to 100 mcg .

Supplementing Vit D not with 400 -800 but 5000 iu per day combined with Vit K2 also with Magnesium to help Vit D absorption.

Top quality B complex tablets. Also separate B12 sublingual.This will also add Folate as reading was 4.66 range 2.91 to 50.00

I have yet to find a good source of Iron. Ferritin reading 113 range 30.00 to 400.00.

I will continue with this plan for 3 months and have another test done for all elements concerned in 3 months.

And I will also give Thyroid UK my total backing .

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It is right you've increased dose.

If we're on levothyroxine it is preferable if GP/Endo forgets about 'normal' range. That may be fine if undiagnosed but if diagnosed and given levo the aim is a TSH of 1 or lower, with FT4 and FT3 in the upper part of the range. Many doctors don't know this. If the patient feels fine on his/her dose and has no clinical symptoms, then that's the dose that suits them. That you have increased your dose is good as two doctors I know stated that nowadays we get too low doses to keep results in range. Whereas when we were diagnosed by clinical symptoms alone (no blood tests then) we were prescribed NDT and it was increased until we were symptom-free.

TSH 2.24 Free Thyroxine 13.3 Total thyroxine 75 range 59 to 154 Free T3 4.49 range 3.10 to 6.00 .

This is a link and I doubt any doctor or endocrinologist is aware of any of it:

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

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Thank you for your reply.

Whatever dosage I have taken in the last 20 years it has never made me feel any better. I will take all the supplements for 3 months plus the increased dosage of Levo from 75 to 100 mcg and if there is no improvement then I will purchase T3.

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Even adding some T3 to a reduced T4 can work wonders. If not T3 only will be beneficial. One doctor, now deceased, stated that we are given far too low a dose of hormones these days.

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Hello Shaws,

Thank you for your reply. This website is top class I have had more help from you all in 4 weeks than I have had from the NHS in 40 years.

I have started to take all the recommended tablets as suggested by various people Vit B complex ,Vit C, D3, F2, Iron, B12 sublingual and I will have to work on the diet .

I was going to take all the above tablets for 3 months to build up my system then take T3 in view of what I have read here that the base of vitamins and minerals must be strong enough for the T3 to work but I feel this morning after reading your text that I will start to take T3 now .

I have had 1 or 2 private posts from people giving me the names of suppliers . Do you have one that you can recommend.

Thank you

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I don't have info as I buy mine, fortunatley, when on holiday.

When the Endo prescribed 10mcg of T3 to my T4 I immediately felt a huge benefit, in that I felt my body was filled with oxygen and pain/stiffness was relieved. A number of weeks later I was phoned at home to stop T3 and I refused, so my T4 was reduced. I was more than happy with that but realised a few weeks later I needed to up dose and that's when I began to self-medicate.

I take T3 only. I wish you well on your next part of the journey.

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Hello Shaws

Thank you for your reply .

I will order from the suppliers recommended by others who have written to me .

You have helped me by giving the dosage you started on.

This could be the best Xmas present that I have had in my whole life.

Thank you.

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I suddenly became very poorly 30 years ago, extreme fatigue, rashes, substantial hair loss then vitiligo - it took 2 years to get diagnosed with systemic lupus. Initially I was told I had scabies !! Put on anti malaria tablets to suppress the immune system. I was a very dark brunette and when my hair grew back it was shocking white I looked like a badger ! Hair specialist said my hair would always stay white - it didn't ! After 3 years being on the anti malaria tablets the specialist asked if I had had a holiday ? I found out that you can only take the medication for 11 months then you need a month break before restarting. I was never told this and nothing was stated on the medication leaflet. I was in hospital the very next day having liver, kidney, lung and extensive eye tests because of the drug continuation. Thankfully all was OK. I've never taken the medication since and have not felt any different. 28 years later after developing SVT I had a heart ablation and then was diagnosed with hyperthyroidism, coeliac and recently Sjogrens syndrome. I am regularly now told that if you have an auto immune condition you will get other auto immune diseases. The average GP has very poor knowledge of auto immune conditions and very little sympathy !

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Have you heard of the Paleo Autoimmune Protocol? It is a lifestyle program aimed at reducing antibodies which contribute to autoimmune diseases. It concentrates on diet, gut healing, stress and sleep management, reducing environmental toxins. There is a lot of good science behind it. If you want to know more these are good websites: Paleo Mom, Phoenix Helix, Autoimmune Wellness.

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Welcome to our forum,

Long before blood tests were introduced, we were diagnosed upon our clinical symptoms alone. We have male members too on this forum but women far exceed them. However, male or female we instinctively feel that what we are diagnosed with may not be correct. I, myself, had a number of diagnosis that were incorrect and you are given treatment for something you don't have.

Before blood tests were invented to detect hypothyroidism we were diagnosed upon clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones) and if we improved we were hypo.

Nowadays a diagnosis is dependent upon where the TSH falls.

You need a full blood test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. The test should be at the very earliest possible, fasting (you can drink water) and if you were taking medication take after test.

Also request B12, Vit D, iron, ferritin and folate too. Deficiencies can cause symptoms.

This is a previous post:-

healthunlocked.com/thyroidu...

and tick off your symptoms:

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

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Positive ANA can happen in the general population and doesn't mean much, so I've read, but it can indicate autoimmune issues. Try to get your thyroid results and post them here. Doctors will say they are in range when thyroxine is necessary - more training and education needed.

Karen

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Auto immune means in the blood and thar includes lupus.

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