Advice CHRONIC FATIGUE ?!!: My blood test... - Thyroid UK

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Advice CHRONIC FATIGUE ?!!

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My blood test results are below been back to go for the 3rd time as was worried about c reactive protein high on bloods he’s now told me to ignore it as other bloods say I’m pretty ok and 13 isn’t high.i requested another thyroid cheak and thyroid antibodies and he siad their is no point as my thyroid level fine I asked if their was any other medication apart from levothyroxine he siad yes if your results were bad ect but they are ok he’s now put all my symptoms memory,weakness,fatigue ect down to CHRONIC FATIGUE which feels like fobbing me off has anyone else had this and from

What he’s saying their isn’t much of a cure just pace yourself or therapy...I

28 Replies
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That's rubbish. Chronic fatigue is a big fob off and even worse, therapy, you'll just go round the houses and it won't address your physical condition. Find a new doctor.

Of course there are things you can do. For a start there is no vitamin D test listed here and your folate is much too low. B12 is mediocre so you could take a good B complex with methylated forms of B that include methylfolate to raise your folate levels. Thorne Basic B or similar will help. Ask doctor to test vitamin D or get an online test done from a reliable lab. Thyroid UK's website lists reliable online labs.

Have you got thyroid antibodies? If you don't know then get TPO and TgAb thyroid antibodies tested. Have you got any gut dysfunction? If so then follow SlowDragon's advice about improving gut function.

Judging by your blood tests here you are doing quite well at looking after yourself so your doctor should be helping by looking further to find what is causing your symptoms. Could you please post your latest thyroid test results and include lab ranges? Doctors often say things are ok when they clearly are not, ditto your elevated CRP. It is only slightly raised but what's the point in having a lab range if doctors are going to ignore it or tell patients to ignore it?? Why hasn't GP tested the obvious and done vitamin D??

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in reply to Nanaedake

I have asked for vitamin d he siad they wouldn’t do it no need and will make a new post at top with thyroid results as won’t let me post here no I have never had thyroid antibodies done and he seems to think theirs no need

Nanaedake
Nanaedake
in reply to Hidden

On what basis did doc refuse vitamin D? Vitamin D deficiency is very common in people with thyroid antibodies. Since the GP has not tested thyroid antibodies, he cannot assert it is unnecessary. Fatigue is a symptom of low vitamin D. What other symptoms do you have? Do you get sun exposure every day around mid-day in the summer? See a different GP and take a list of your symptoms, if you work 9-5 and nevver see the light of day then tell the GP that too.

Article on vitamin D deficiency in patients with thyroid antibodies

holtorfmed.com/vitamin-d-au...

Research

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

As 95% or thereabouts of hypothyroidism in the UK is caused by autoimmune thyroiditis, your doctor should check this out - no excuses allowed!!

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in reply to Nanaedake

He’s told me bloods are fine folates little low but also fine wouldn’t effect me but I have folic acid tablets now thyroid is in range and ok so won’t test for Notting else to do with thyroid as he siad ITS NOT THAT THYROID IS OKITS CHRONIC FATIGUE and the sooner I accept it sooner I can get better or manage it

Nanaedake
Nanaedake
in reply to Hidden

Chronic fatigue isn't a disease it's a symptom of something gone wrong that needs to be put right so simply 'accepting it' like your doctor says is not going to make you get better is it? How on earth are you supposed to 'manage it' when you don't know what 'it' is? You would be aiming to stick a plaster on a wound blindfold. You need to change your doctor. Many of us have been told similar things. Either go back to the doctor and ask him/her to investigate vitamin D levels and you won't be happy until this is done, get the tests done privately or find a new GP. Print out the research to emphasise your point. Did you manage to post thyroid results?

I've looked through your past posts, and you don't seem to have posted your thyroid results, anywhere. Do you have them?

Yes, he is just fobbing you off with CFS. Don't accept that. Stick to your guns!

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in reply to greygoose

Yes I do it won’t let me add to this post so will make new post now and put them on

greygoose
greygoose
in reply to Hidden

No, you can only put one photo per post. :)

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in reply to greygoose

Posted new post with results

SlowDragon
SlowDragonAdministrator

Your GP is being extremely unhelpful

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and very important to test vitamin D

your folate is BELOW range and B12 low. Your GP should be testing for Pernicious Anaemia before starting folic acid supplements

Suggest you see a different GP and request that tests are done for Pernicious Anaemia and then prescription for folic acid supplements to treat below range folate

Alternatively you will need a good quality daily vitamin B complex, one with folate in, eg Igennus Super B complex or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin is rather low. SeasideSusie may comment on iron results

Eat liver or liver pate once a week should help improve ferritin

Also politely request vitamin D is tested and also that thyroid antibodies be tested for autoimmune thyroid disease

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Are you on Levothyroxine? If so what dose and please add most recent results and ranges for TSH, FT3 and FT4

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in reply to SlowDragon

Where is best place website in uk to get full thyroid and vitamin d done as he’s refusing to do any he told me I havnt got anemia from looking at my results and blood count and no need for more testing he’s told me I have chronic fatigue and also testing for sleep apnea which I wouldn’t say I have as the only thing I do is sleep well but just not enough of it as I could sleep forever

Nanaedake
Nanaedake
in reply to Hidden

Thyroid UK list reliable labs that many on here have used. You can choose finger prick tests for most.

thyroiduk.org/tuk/testing/p...

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I will have to try as this is getting me down yes thyroids in other post

I have already told you how and where Rocky stop panicking relax and take in the good advice and you will get well. Here goes again Blue Horizon (thyroid 11) test will give you all the information you require. Take the test first thing on an empty stomach, leave of Levo for 24 hours prior to the test.

Post the results on this site with the ranges include what and how much medication you are taking.

Then wait for answers. This is exactly what I did two years ago and am now feeling well.

I had exactly this happen to me 7 months ago.

It’s all on my profile but I had been unwell since the previous September and gps could find nothing wrong. Everything was “in range”.

But I was awful, the fatigue was terrible, pots on standing, tinnitus, random pain, nausea, anxiety.... the list goes on and on.

However, I refused to believe the cfs diagnosis. We had had a horrendous year with two sudden family deaths and other illness, and this combined with being a modern day mummy of two young kids (one with adhd) I believe caused my problems.

I’ve done loads of reading -I have a science background so that helps! - and this site has been great for advice and more places to research.

Don’t give up, take digestive enzymes, sort out your gut function (I didn’t realise mine was so poor), raise all your vitamin levels, mine are only starting to pick up now and honestly, you will get better. Some of the cfs advice is good - rest lots and listen to your body and rest or stop when you need to but honestly, the amount I have improved over even the last 6-8 weeks is incredible. I think my whole endocrine system was just struggling and it impacted on everything.

My main advice would be get hold of your blood results, post them on here if you need help with them and take advice from as many places as you can... your gp being a tiny part of that. I will never take what my gp says as gospel ever again.... they’re still saying my ferritin is irrelevant and it’s rock bottom of the range and dropping, despite supplementing. The next hurdle!

Good luck 😉

Can you recommend a digestive enzyme? I've been on antibiotics on and off for years due to acne, my gut is probably a mess!

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in reply to Murphysmum

Thank you will take all advice going to get private bloods done what are digestive enzymes and how to I sort gut I’m taking b12 folic acid daily and levothyroxine 150mg

Is this vitamin c you checked?

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in reply to Ari3

Yes I think so they done everything part from vit d and thyroid antibodies

Ari3
Ari3
in reply to Hidden

Do you remember on a blood sheet did he write down as separate as vitamin c or he ticked any of the boxes?

I don’t have a great deal of advice, but yes been through similar. I was diagnosed with Post Viral Fatigue Syndrome 20 years ago and pretty much told ‘there you go you have a diagnosis now sod off and leave us alone.’ No support or advice. Had to severely reduce my hours at work to the point of nearly having to sell my home and move back in with my parents.

Anyway, let’s no story short, I recently had private bloods which suggested Hashimoto’s disease. GP didn’t know what to do so sent me endocrinologist. The NHS doesn’t really acknowledge Hashimoto’s so no diagnosis or treatment. And to be far my systems are worse than my thyroid bloods would suggest they should be. Endocrinologist did a very thorough blood screen (7vials of bloods) and from his letter clearly didn’t expect to find anything. However, my rheumatoid inflammatory marker is up, my testosterone is down and one of the fats in my liver is up. I’m now waiting for a rheumatology appointment and to have my bloods reviewed in 4 months. All these things have very similar sign and symptoms and could explain why they are worse than individual bloods suggest they should be.

It could be worth paying for your own thyroid blood tests, you if your on the Facebook thyroid uk site you can get offers from medichecks every Thursday. It may or may not help as they may indicate Hashimoto’s or Graves’ disease which aren’t really recognised by the NHS and no guarantee that a private Dr would treat either.

My personal opinion is (and this is coming from 22+ years working for the NHS) that Drs are to quick to diagnose Chronic Fatigue (ME) and such like without doing complete bloods. As with the thyroid they do basic checks on everything but not full, probably due to the expense. Again you could get them done privat if you can afford it. But you could have several things going on or you may well have Chronic Fatigue. It might be worth checking out the ME Association for further advice, and I would avoid ‘pacing’ as studies are showing that long term it is more harmful for ME suffferers. I basically gave up most of my life in order to have the energy for day to day with out major lows. Slowly very slowly over many years my energy did improve but not so I have a full active life. But everyone is different. Fingers crossed for you.

You need your Vitamin D tested. A lot of people in the UK are deficient; on that basis alone he should run a test to confirm just how deficient as a standard 800iu supplement won't help if your levels are on the floor.

If you can afford it, get a full thyroid panel done as well as an early morning serum cortisol test to rule out adrenal insufficiency/Addison's.

What's the point in having ranges if they ignore them? C reative protein is meant to be < 5... 13 is well above this and should be looked into.

Ferritin and folate are too low.

B12 is almost ok, but could use improvement.

Good luck!

Hi. I have SAI. Have you had your cortisol level checked. 9am should be no less than 350-400.

Hi rocky,

The diagnosis of CFS/ME is a dead end medically as there is no treatment that actually works because CFS isn't caused by depression and/or not taking enough exercise. Lots of doctors are now saying that the CBT and GET treatment currently used for CFS shouldn't be used as it can make lots of people feel worse. See this link for an article in Nature, nature.com/articles/d41586-..., about current research into CFS. It mentions that research is being done into endocrine disorders as being a possible cause for the group of symptoms currently known as CFS. You could take this to your GP.

Also your ferritin is too low, s/b around 100, B12 s/b at top of range, folate s/b top third of range and def get D3 tested as to be well it needs to be high in range. As others have said we need to have a look at your thyroid results.

You can get a handle on your problems but it will involve taking some steps yourself and not relying on the GP, and this step alone can be scary for people, but if you are able/willing to take it your health outcomes can change.

Best of luck

SlowDragon
SlowDragonAdministrator

3 years ago aged 57, I was looking at life in wheelchair or mobility scooter...on 125mcg Levo with "perfect " blood test results....according to GP and endo.

On advice from the forum here I got full vitamin and thyroid test privately. Bloods showed Vitamin D deficiency. Couldn't tolerate vitamin D supplements due to being Magnesium deficient. Corrected both with supplementing. Realised it meant likely gluten was problem. Severe Gluten intolerance confirmed by endoscopy, despite absolutely no gut symptoms at all.

Peripheral neuropathy started due to B12, folate and other B vitamin deficiencies. Apparently this often only becomes apparent once vitamin D deficiency corrected. Very useful website on link between low vitamin D and low B vitamins

drgominak.com/sleep/vitamin...

DIO2 gene test confirmed heterozygous gene variation. Now on 125mcg Levo AND NHS prescribed 20mcg T3. Completely 100% better, can walk as far as I like and be as busy as I like.

Do NOT accept a lazy label of CFS

More detail on my profile

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in reply to SlowDragon

Thankyou what I’m wondering if I get private bloods and it says thyroids low or antibodies not right how do I get my levothyroxine put higher as go won’t do it on my ths level

SlowDragon
SlowDragonAdministrator
in reply to Hidden

One step at a time.

Getting tests first. Making sure to get blood drawn as early as possible in morning, fasting. Plus making sure no Levo in 24hours prior to test. If you normally take Levo on waking, take immediately after blood draw. If normally take at bedtime, delay until immediately after blood draw

Once you have results come back here for advice on new post.

Improving vitamins is essential and likely to push TSH higher. Looking at food intolerances if you Hashimoto's

Looking at a recommended thyroid specialist, from the Thyroid UK list, if your GP remains unhelpful

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