Could there be a link between Hypothyroidism an... - Thyroid UK

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Could there be a link between Hypothyroidism and CFS?

TortoiseLady
TortoiseLady

I finally changed doctors surgery 4 weeks ago, due to years of 'no further action' post-blood tests for a wide range of symptoms which were slowly worsening, not the least of which is feeling absolutely knackered all the time and very very fed up. My new docs redid bloods, within 2 hours the lab phoned him, and he called me to collect a prescription for levothyroxine - he said I had a count of '3'. As a newbie, I have just joined this site, so I don't yet have the thyroid-related vocabulary to do myself justice, but will do research to better inform myself of what '3' means, and any options I might have, and any further tests which might be done, going forward. I have asked my docs to make full copies of all my medical history (for a fee), so I can see what I have actually been tested for in the past, and the outcomes. 30 years ago a Harley St doctor concluded that I had ME - now called CFS. At that time, after many tests at my GP's, my bosses suggested I use the private route which they paid for. Harley St said that I knew I was ill, my bosses knew I was will, and he knew I was ill, but there was nothing he could pin it on, and concluded I'd had a secondary viral infection resulting in ME. It took 3 years to more-or-less clear, but left strange symptoms which I have alternately tried to ignore and then at bad times re-presented at docs for help, with no specific outcome or diagnosis. The worst of the symptoms of my supposed CFS, were very similar to what I have felt more recently - could there be any link? I am due for blood retests in 3 weeks time, and must admit that at the moment, after morning sickness (I am not pregnant), I feel fine from about an hour after my morning tablet (50mg) and up to about 2pm, and then I start to go a bit downhill for the rest of the day. Infuriating for a fixer and a go-getter!. Wondered though, if anyone else had also had a diagnosis of CFS at some time in the past (albeit there seems to still be no test for it) and my situation could have been misdiagnosed all those years ago. Apologies about the super-long posting - I should have put a warning at the head of it. K.

14 Replies
SlowDragon
SlowDragonAdministrator

Yes CFS is often undiagnosed thyroid problem

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

How much Levothyroxine are you being started on?

Usual starter dose is 50mcg, but if over 50 years old, or been hypothyroid a long time, then you may start on 25mcg Levothyroxine

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Blood will be retested 6-8 weeks after each dose increase

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)

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Thank you for your comprehensive reply.

I now have electronic access to my patient records. My recent tests are below, and then further below are some test results from 2013 / 2014. Time is a bit tight at the moment, but I am continuing to read through the enormous amount of information on the Thyroid UK website and this forum. The community here is extremely helpful with tips on how to navigate our health system, what tests to request, and which might be done privately. Due to the info on here, I have stopped my use of Duraphat 5000 toothpaste too.

Kind regards, K

13/9/2018

Serum free T4 level 4 pmol/L [11.0 - 22.0]

Below low reference limit

Severe hypothyroidism. Consider thyroxine

replacement once a repeat sample has been

organised.

Serum vitamin B12 level

Serum vitamin B12 level 462 ng/L [150.0 - 99999.0]

Serum magnesium level 0.79 mmol/L [0.7 - 1.0]

Thyroid function test

Serum TSH level 85 miu/L [0.25 - 4.0]

Above high reference limit

14/9/2018

Thyroid function test

Serum TSH level 91 miu/L [0.25 - 4.0]

Above high reference limit

Serum free T4 level 4 pmol/L [11.0 - 22.0]

Below low reference limit

Severe hypothyroidism confirmed.

Consider thyroxine replacement.

I am due to have the next round of blood tests in three weeks' time which will be two months since diagnosis, and I can see on the blood test form that I will be tested for antibodies.

May 2013

Test result Serum free T4 level;Thyroid function test;Erythrocyte sedimentation rate Report, Normal, Communicate Patient (Patient Informed)

Coded entry Serum TSH level 5.88 miu/L [0.25 - 4]

Coded entry Erythrocyte sedimentation rate

Coded entry Serum free T4 level 12 pmol/L [12 - 22]

Coded entry Thyroid function test

Coded entry Erythrocyte sedimentation rate 5 mm/hr [1 - 20]

October 2013

Test result Thyroid function test Report, Satisfactory, No Further Action (Patient Informed)

Coded entry Serum TSH level 4.85 miu/L [0.25 - 4]

Coded entry Thyroid function test

Coded entry Serum free T4 level 13 pmol/L [12 - 22]

April 2014

Test result Thyroid function test Report, Borderline, Other (rpt in 6mnths) (Patient Informed)

Coded entry Thyroid function test

Coded entry Serum TSH level 5.32 miu/L [0.25 - 4]

November 2014

Test result Serum vitamin D level;B12/folate level;Thyroid function test;Full blood count;Differential white blood cell count;Erythrocyte sedimentation rate Report, Normal, No Further Action

Coded entry Serum TSH level 3.82 miu/L [0.25 - 4]

Welcome to the forum. Love the name ~ I am also a tortoise lady🐢. You are most definitely in the right place. I was diagnosed with ME, (yuppie flu at the time😕) CFS, Raynauds, Sjogrens, post viral fatigue, and fibromyalgia ~ my current label.

I was also very ill for 3 years initially, although the reasons may differ. Anyway, I have had a lot of improvements from taking advice from this brilliant forum. It seems thyroid/adrenal and hormonal problems are very much at the root of these 'diseases'.

Copies of medical notes should be provided free of charge now, unless from a private source? in which case I don't know. If you could post the full results when you get them, you will get lots of excellent advice.

Someone will no doubt be along soon to provide you with advice/links to read. After 25 years of debilitating ill health, this forum is literally saving my life.

Glad you found it ~ good luck 🌻🐝 x

ME/CFS and fibro are what we call 'dustbin diagnoses'. When a doctor doesn't know what's wrong with you and/or can't be bothered to find out, he 'diagnoses' you with CFS or fibro. The, he can just wash his hands of you and every time you come to complain about something, he can say 'oh, it's your CFS/fibro, there's nothing we can do'. So easy! A Lazy-Doctor Diagnosis.

CFS/fibro are very often undiagnosed/under-treated thyroid, but could also be due to other hormonal imbalances and/or nutritional deficiencies. Have you ever had your nutrients tested? Vit D, vit B12, folate and ferritin? If these are low, they can also cause symptoms, so best to get them tested if you haven't already. :)

Hi TortoiseLady,

Sorry to hear that you have been having such a bad time but rest assured you will get tremendous help and support from all the knowledgeable and kind people on this forum.

I was also diagnosed with CFS and SAD about 25 years a go and borderline hypothyroidism 22 years ago. My GP would say I had CFS in the Summer and SAD in the Winter. greygoose is spot on CFS and ME are definitely a Lazy Doctor Diagnosis!

However, I was looking on Medichecks website this morning, as I need to have my bloods tested again and I noticed that they do a Chronic Fatigue blood test, from what I can remember they do 17 tests and it costs £245.00.

I hope things start to improve for you soon.

davidlee72
davidlee72 in reply to HKAnne

p.s. don't forget that Medichecks have a 20% discount until the end of this month, if you go down the private testing route, enter the discount code MED99 in checkout.

HKAnne
HKAnne in reply to davidlee72

Thanks for the reminder davidlee72, I had forgotten!

There certainly is a link between low T3 and CFS which probably extends to hypothyroidism:

Front. Endocrinol., 20 March 2018 | doi.org/10.3389/fendo.2018....

Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

Begoña Ruiz-Núñez1,2*, Rabab Tarasse1, Emar F. Vogelaar3, D. A. Janneke Dijck-Brouwer1 and Frits A. J. Muskiet1

Paper downloadable

I would recommend looking at this website for lots of information you could find useful/interesting. I definitely believe there is a link between CFS and thyroid. Vitamin and mineral tests and supplements have helped me a lot.

Oops, forgot the link. drmyhill.co.uk

SlowDragon
SlowDragonAdministrator

Your results from May 2013 and April 2014 had above range TSH and rock bottom FT4, so you were hypothyroid right back then. You needed thyroid antibodies tested back then, if antibodies were high, Levothyroxine treatment should have been prescribed. If you had symptoms, even with no antibodies, a trial of Levothyroxine could have been started

Essential to test both TPO and TG antibodies and vitamin D, folate, B12 and ferritin at next test

50mcg Levothyroxine is only the standard starter dose. Dose is increased slowly in 25mcg steps, retesting bloods 6-8 weeks later each time. This continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Hello SlowDragon, thanks again for your informative reply. The thyroid antibodies test will include TPO and TG. My vitamin levels won't be checked this time around - I can't get a GP appointment in time in order to add this to the bloods request, but I will get those checked separately and privately if necessary. From my online medical records, I found these results from January this year.

Serum vitamin B12 level 382 ng/L [150 - 99,999]

Serum folate level 4.3 ng/ml [4.2 - 19.8]

Serum iron level 12 umol/l [9 - 27]

Serum total bilirubin level < 3 umol/L [3 - 20]

Serum alanine aminotransferase level 11 iu/L [0 - 40]

Serum alkaline phosphatase level 77 iu/L [30 - 120]

Serum transferrin level 2.08 g/L [1.84 - 3.44]

Kind regards, K.

SlowDragon
SlowDragonAdministrator in reply to TortoiseLady

January results show rock bottom folate and below 500 B12 is often too low

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid eg Igennus Super B complex (full dose is two tablets per day, but perhaps try just one.) B vitamins best taken in morning after breakfast

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...

Getting vitamin D tested next via NHS postal kit £29 if GP won't

vitamindtest.org.uk

Likely too low, supplementing to improve to around 80-100nmol

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Your magnesium level pretty low and supplementing vitamin D increases need for magnesium, so you might start supplementing magnesium supplements before starting vitamin D

Magnesium also good for improving constipation, common hypothyroid symptom

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

Unfortunately CFS has become an umbrella term these days, a bit like IBS. some people genuinely suffer from it, but for a lot of others, all it means is "you're fatigued, but we don't want to spend any time to work out why".

Thyroid is definitely a condition that causes fatigue - if you get on the right dose of medication, you should improve.

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