Husband has possible CFS/ME - could someone loo... - Thyroid UK

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Husband has possible CFS/ME - could someone look at his results?

sid3108
sid3108

Hi, I'm new here. My husband (50) has been ill for the past year, started with headaches, then about 8 months ago, extreme tiredness. Since lockdown started end of March, he has slept 16-18 hours every day. He seems to be more awake in the evenings now. He also has headaches, chest pain, numbness in arms, reflux, freezing cold hands and feet, dry skin and he's lost some of his eyebrows! His GP has not been much help. He's had lots and lots of blood tests over the 3 months. He has now been referred to a CFS clinic. I asked for his blood results to be sent to me last week. I went through them and found two that are high (one very high - B12). I phoned his GP and she said oh yes, I'm not sure what that means, I'll get back to you! My husband had Hodgkins Lymphoma 16 years ago, the GP has said (before I saw the results) all the blood tests are okay, so there is nothing nasty to worry about. I am worried now.

(12 Mar) - Serum TSH: 0.92mu/L (0.27-4.2)

(26 May) - Serum TSH: 1.73mu/L (0.27-4.2)

(26 May) - Serum free T4: 14.8pmol/L (12-22)

(12 Mar) - (Serum ferritin: 89 ug/L (30-400)

(6 May) - (Serum ferritin: 191 ug/L (30-400)

Serum folate: 16.5ug/L (3.9-20)

Serum B12: 1350ng/L (>180)

There are lots of other results inc. full blood count.

Any help would be useful.

Thank you.

70 Replies
oldestnewest

should have said his B12 test was on 12 March - he doesn't take any supplements/injections.

fibrolinda
fibrolinda in reply to sid3108

GP not got back to you about high b12 though test was in March? High b12 CAN indicate liver problems, please note can, but should be checked, also blood disorders. I would chase up GP about this.

SlowDragon
SlowDragonAdministrator

What vitamin supplements is he taking ....if any?

High B12 can be misleading

Assuming not been taking any vitamin supplements....this can mean functional B12 deficiency

Getting further B12 testing here

nutris.viapath.co.uk/pages/...

Also recommend getting FULL thyroid testing

TSH, Ft4, Ft3 and BOTH TPO and TG thyroid antibodies

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Blue Horizon Full thyroid test but not including vitamins

bluehorizonbloodtests.co.uk...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Plus separate vitamin D test If not testing with thyroid

vitamindtest.org.uk

sid3108
sid3108 in reply to SlowDragon

Thank you so much for your reply - I did order a full panel a while ago, but my husband was too weak to get enough blood. I need to find out if we can get someone to draw the blood. Thanks again.

SlowDragon
SlowDragonAdministrator in reply to sid3108

They should send you a new one if you couldn’t process first one

Ask for one that’s for blood draw instead

sid3108
sid3108 in reply to SlowDragon

Hi, my husband had the full thyroid panel and the results are as follows. I have posted this on another post, but I'm confused as to whether he has an thyroid issues. I'm becoming quite desperate as he is very depressed; he was diagnosed yesterday by the cfs clinic, with cfs/me. I know it's just a symptom and there is always a root cause of all of the awful symptoms he has, but I don't think the cfs clinic will be any help. They've just offered CBT! I would appreciate any comments on the Free T3, antibodies etc. Thank you.

So, I booked a private ultrasound for his liver, kidneys and pancreas, which he had on Saturday, and, thankfully, was okay. Following are his Medicheck results for Thyroid panel:

CRP HS: 0.6 mg/l (range <5)

Ferritin: 201 ug/l (range 30-400)

Folate: 8.58 ug/l (range >3.89)

B12 Active: >150 pmol/l (range >37.5)

Vitamin D: 62.4 nmol/l (range 50-175)

TSH: 1.51 miu/l (range 0.27-4.2)

Free T3: 4.79 pmol/l (range 3.1-6.8)

Free Thyroxine: 16.4 pmol/l (range: 12-22)

Thyroglobulin Antibodies: 12.7 kiu/l (range <115)

Thyroid Peroxidase Antibodies: <9 kiu/l (range <34)

SlowDragon
SlowDragonAdministrator

Ask for thyroid ultrasound scan too

Possible link between Hashimoto’s and Hodgkin

jamanetwork.com/journals/ja...

As someone who was diagnosed as having fibromyalgia and CFS/ME, it took about 20 years before I found the answers I needed.....here. I had been wrongly diagnosed and medicated for decades!

Link to TUK .....lots of info.

thyroiduk.org/hypothyroid-b...

My thoughts on your husband's situation....

26 May) - Serum TSH: 1.73mu/L (0.27-4.2)

For good health TSH should be closer to 1

A paper on diagnosis and treatment

bmcendocrdisord.biomedcentr...

Does your husband have any labs for FT3? This reading is important, along with FT4 we can identify his ability to convert T4 (the storage hormone) to T3 (the active hormone) which, for good health, is required by the trillions of cells in the body in a sufficient and constant supply.

The NHS rarely test FT3 ...now wrongly relying on TSH.

I see his FT4 is very low 14.8 (12 - 22) which means his result is only 28% through the ref range.

Ideally FT4 and FT3 should both be close to 75% through the range.

At 28% I suggest he should be on a thyroid hormone replacement protocol...I'm assuming he has not been offered this treatment.

His symptoms and low FT4 suggest hypothyroidism but for a more accurate evaluation FT3 ....part of a full thyroid panel - is also required.

Many of us have come to rely on private tests

thyroiduk.org/getting-a-dia...

You may find this paper interesting it relates to CFS and low T3

frontiersin.org/articles/10...

Sadly medics are very poorly educated in thyroid disease...most endos are diabetic specialists! This one doesn't sound any better, her job is to put her patient's minds at rest, not to worry them!

I'm not a medic just another member who has been helped through a long dark thyroid tunnel by some very experienced members.

Good luck

DD

sid3108
sid3108 in reply to DippyDame

Thank you, that is all so interesting. I am so sorry for you having to endure being ill for such a long time when a few simple tests were needed. It has been very frustrating, he feels so ill now. I will have to get the full panel test some how. It seems his tests weren't really looked at, but, as you say, many doctors aren't looking for the right thing anyway. Thank you.

Can I just ask another question - can TSH be okay but FT3 or FT4 be low and cause hypothyroidism?

greygoose
greygoose in reply to sid3108

Absolutely, yes. In fact, his FT4 is pretty low. It's only 28% through the range, and should be about 50% if he were euthyroid. And, if his FT3 is equally low, then you could be looking at Central Hypothyroidism.

Central hypo is where the problem lies with the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo) rather than the thyroid itself (Primary Hypo).

The pituitary secretes TSH, and is supposed to increase production when it detects low levels of thyroid hormone in the blood, to stimulate the thyroid to make more hormone. The less thyroid hormone there is, the more TSH there should be. But, if there's a problem with the pituitary, it doesn't do that, so you end up with low/low normal TSH and low FT4 and FT3.

Or, it could be that there is a problem with the hypothalamus which has to tell the pituitary to make TSH, but producing a hormone called TRH (thyrotropin-releasing hormone). If the hypothalamus doesn't do that, then the pituitary won't secrete TSH, and the thyroid won't make thyroid hormone. Sorry, it's all a bit complicated.

Central Hypo is considered to be rare, so it is rarely tested for, and most GPs have never even heard of it. So, not surprising your GP - who will only be looking at the TSH, anyway - doesn't pick up on it. It's often the patient that has to do the research and request a referral to an endo. And, not even all endos know what it is, because they are mostly diabetes specialists. So, it can be difficult to get a diagnosis of Central hypo, and you might have to fight for further investigation, I'm afraid. But, the first step would be to get the FT3 tested. And, that will probably have to be be a private test, as SlowDragon has suggested. :)

sid3108
sid3108 in reply to greygoose

Thank you for your helpful reply. What also confuses me is, can these problems just develop at any time? He started having headaches about a year ago and it progressed to fatigue then all the other symptoms.

greygoose
greygoose in reply to sid3108

Did he have any sort of accident, or a bang on the head or something? Rather sounds as if he did, if he started having headaches.

Or it could be a benign tumour on his pituitary, which has grown to the point of causing problems. He really needs a brain scan.

sid3108
sid3108 in reply to greygoose

Hi, no, he's had no head injuries. He had a private mri in November for the regular headaches (waiting list for nhs was 6 months). Mri was clear,

greygoose
greygoose in reply to sid3108

Well, could still be something that isn't showing up. But that's certainly what it's looking like: Central Hypo.

Hillwoman
Hillwoman in reply to sid3108

The first significant hypothyroidism symptom I suffered, aside from fatigue and poor cognition, was repeated severe headache. I was assessed many times for brain tumour and related conditions, because my thyroid test results were "normal". This was a very drawn-out process in the days before MRI scans became available.

Forty years later, exactly the same set of symptoms started in my husband. A brain tumour was suspected, but was ruled out after MRI. His thyroid tests too were "normal". Actually, his TSH and FT4 results were similar to your husband's, but we decided on self-treatment with desiccated thyroid extract, usually known as NDT. The headaches disappeared rapidly. Other symptoms have been more difficult to treat.

sid3108
sid3108 in reply to Hillwoman

Thank you for your message, it's very interesting. He is so ill at the moment. He has a telephone consultation with the cfs clinic on 16th July. The only reason I want him to do it, is so we can apply for any benefits he might get; we have two young children and I only work a few hours a week. It's all very scary. I'm not holding out much hope of the clinic helping. I will have to look at alternative treatments. We are waiting for a nurse to come to take blood for the Medicheck Thyroid panel.

Hillwoman
Hillwoman in reply to sid3108

I'm afraid it's highly unlikely the CFS clinic will help your husband with his thyroid function. If they are sympathetic, they might be able to put pressure on the GP to do a more thorough job re the thyroid.

I sympathise with the precariousness of your situation and how frightening it all feels. It's bewildering to be ill, or have your partner fall ill, without an obvious route for help and support.

Can I suggest that you or your husband get a copy of Paul Robinson's The Thyroid Patient's Manual. It is up to date and comprehensive. Paul has a Facebook group with the same name, where people can ask him and other members for clarification about the diagnostic and treatment approaches described in the book.

Mamapea1
Mamapea1 in reply to sid3108

I hope the phone consultation went ok. If you're going to apply for any benefits, you may need to join up at benefitsandwork.co.uk for advice, especially now as everything's changed...you'll need all the help you can get to plough your way through it. They keep up to date with the changes, and explain how to word things on forms. It was all new to me, and they were a great help, as were the CAB.

Don't try and deal with it alone while you've got so much going on...they run rings around you. You have to lay everything on double thick or you'll get nowhere. I went without any income at all for 12 months whilst very ill because I didn't understand how ridiculous the system was. Thank goodness I had family to help me.

Whatever the outcome of further tests, bear in mind your husband will need to rest and recuperate for quite some time, so you might be in for the long haul, and you don't need additional money worries x

sid3108
sid3108 in reply to greygoose

So, I booked a private ultrasound for his liver, kidneys and pancreas, which he had on Saturday, and, thankfully, was okay. Following are his Medicheck results for Thyroid panel:

CRP HS: 0.6 mg/l (range <5)

Ferritin: 201 ug/l (range 30-400)

Folate: 8.58 ug/l (range >3.89)

B12 Active: >150 pmol/l (range >37.5)

Vitamin D: 62.4 nmol/l (range 50-175)

TSH: 1.51 miu/l (range 0.27-4.2)

Free T3: 4.79 pmol/l (range 3.1-6.8)

Free Thyroxine: 16.4 pmol/l (range: 12-22)

Thyroglobulin Antibodies: 12.7 kiu/l (range <115)

Thyroid Peroxidase Antibodies: <9 kiu/l (range <34)

greygoose
greygoose in reply to sid3108

Well, there's nothing much to see there. His folate could be higher. His Vit D should be higher. But apart from that...

His thyroid hormones are euthyroid, and his antibodies are low. So it doesn't look like he has a thyroid problem. One might still develop, but for now there's nothing to show a problem.

You could try testing his adrenals next: a 24 hour saliva cortisol test and DHEA.

sid3108
sid3108 in reply to greygoose

Thank you very much for your reply. He's had an Adrenal Function saliva test and it was okay. He's been diagnosed with cfs/me now. I can't just follow their advice and wait to see what happens. Will have to keep trying to find out what's wrong.

greygoose
greygoose in reply to sid3108

Well, don't give up on the thyroid. Keep testing from time to time to see how things evolve. Symptoms can make themselves felt long before abnormalities show up in the blood tests. But, doctors don't know that.

sid3108
sid3108 in reply to greygoose

Thank you. I can see this being a very long and difficult journey.

greygoose
greygoose in reply to sid3108

It very often is, yes.

Yes, when the problem is with the pituitary gland or the hypothalamus - called central hypothyroidism, but GPs are taught that it is very rare (it probably isn't) and it needs a decent endocrinologist to diagnose (not a diabetes specialist)

And another one, sorry! Would High B12 be linked to Hypothyroidism?

I think your husband would benefit from getting antibodies tested, if you can.

In general terms if ft4 and Ft3 are below range and TSH is towards the bottom, this can be "central hypothyroidism", if TSH is higher, your doctor will likely call it "subclinical hypothyroidism", although it would benefit from treatment.

sid3108
sid3108 in reply to Cooper27

Thank you, I will aim to get his FT4 & FT3 tested.

I asked for his blood results to be sent to me last week. I went through them and found two that are high (one very high - B12). I phoned his GP and she said oh yes, I'm not sure what that means, I'll get back to you!

Serum B12: 1350ng/L (>180)

Has your husband been supplementing vitamin B12 at all? If he has then the result of 1350ng/L is not a problem. Mine is often over 2000.

If your husband is NOT supplementing B12 then there are other possibilities that could explain the result, and they aren't all good...

academic.oup.com/qjmed/arti...

If you click on the PDF option in the link above you will be linked to a PDF version of the paper which you can download and print. It might be worth giving a copy to your husband's doctor.

Thank you for the information and link - it is quite scary, especially as the blood was taken on 12 March and the GP didn't notice the high level; I noticed it last week on results they sent to me. I am going to have to insist they do something now as it could be very serious.

Mamapea1
Mamapea1 in reply to sid3108

It's a good job he has you to look out for him...they never seem to notice anything! I too have been through the mill with their ignorance. Try not to worry and do let us know how he gets on. Don't bother wasting time with the CFS clinic...take advice from here and hopefully you will get to the bottom of it and he will get well. Best of luck to you both🍀 x

sid3108
sid3108 in reply to Mamapea1

I'm sorry, I missed your message a couple of weeks ago. Thank you. I've added an update below. His health is up and down and no help from doctors. They said they would phone once a fortnight to check on him (during lockdown). Nearly three weeks now, I've phoned surgery, they say his Dr is very busy (part-time) and hasn't got any slots for a phone call! It's unbelievable really.

Mamapea1
Mamapea1 in reply to sid3108

Don't apologise, I'm sure you've got much on your mind at present. They haven't got any slots for even a phone call? That's appalling. Obviously he has been well and truly been cemented into the CFS/ME category and discarded. Perhaps you should find someone else who will listen to your concerns? I'm afraid I'm of the opinion they're all useless with these things, but you need someone to look into his health issues and give you a sensible diagnosis so you can move forward.

As others have advised, he needs to have a comprehensive test for thyroid levels, vitamins, and antibodies, which all have to be checked together at the same time, in the same test. It's unlikely the GP will do this, as they rarely check T3 now, which is the most important one! I would suggest you do a Medichecks Thyroid Check Ultra Vit test...it's impossible to tell what's going on otherwise...check for money off offers on Thursdays, as they're quite frequent. Posts the results in a new post. If that shows nothing untoward, although I'm guessing his T3 levels will be low, then his adrenals will also need to be tested, as it sounds like he also has some form of adrenal fatigue, which is common with thyroid problems, and can be fixed.

Again, unfortunately, this is another area they don't understand, and will probably offer [if you're lucky] an early morning cortisol blood test, and even if it's very low [as in my case] they'll tell you it's 'fine', but if it's offered, take it, and post results. You could explain to them that he's often a little better in the evenings and you'd like his morning cortisol tested. A private four point saliva test would be the best bet for that, but I'd get the thyroid test done first, to see where he stands. I can't see a vitamin D test...did GP do one? Hopefully he's not too stressed out by all this, as stress is the worst.

Did you print out the PDF from humanbean and forward it to the GP? It might serve to motivate them into action. If he has got some form of hypothyroidism, it may not be seriously considered, because apparently it's less common in men, and even us women can't get adequate treatment or diagnosis...a ridiculous situation😕

I'm afraid I can't comment on the very high B12 levels, as I take large amounts and actually need mine that high, but as he's not supplementing, and given his awful symptoms, it needs a full investigation, and you really have to insist on it, as they wont listen. x

sid3108
sid3108 in reply to Mamapea1

Thank you so much for taking the time to give your answer. It is really helpful. Funnily enough, he has just done an Adrenal saliva test, we are awaiting the results now. Haven't done a Vitamin D test. He found it very difficult to do the B12 Medichecks test, but I will try to get him to do the Thyroid one as it seems it is definitely needed.

I've given up hoping the GPs will do anything. Like you say, they have put him in the CFS/ME box, even though we haven't heard back from the CFS Clinic yet. Tbh, there are lots of things he could have, they don't seem interested, it is unbelievable. I haven't spoken to them for three weeks as I can't get hold of them, so I haven't shown them the B12 info. I know, for sure, they won't take any notice. Last time we visited the surgery, we saw another GP, she told me to stop looking at the internet! I'll have to wait to see what Medichecks say about his B12 result. I have contacted them to look at his result; I did give some info. when he did the test but will see what they say now.

He is still breathless quite a lot, he's not overweight, he also gets numbness and tingling in his arm and back and he yawns alot, as if he's exhausted, when he has only been awake for half an hour.

It will be amazing if this turns out to be a thyroid problem.

Thank you again for your help and support.

Mamapea1
Mamapea1 in reply to sid3108

I'm so glad you've done the saliva test. Apologies if you've mentioned this in previous posts...I'm suffering with tech problems at present, and I'm unable to access profiles, so I can't look it up. So annoying, and I'm more than useless with these things.

If you found it difficult to extract the blood for the Medichecks, here are some useful suggestions which I garnered from Seaside Susie:

Some people run up and down the stairs or take a shower to get the blood flowing, or circle their arm around like a windmill. Have a bowl of hot water to dip hand in and out until hand goes red and if blood flow stops, swish around in the hot water again. Stand up to do the test, with arm straight down. Prick finger on the side, not the tip, halfway between the nail bed and tip, or nearer nail bed, on ring finger or middle finger. Don't squeeze the finger to get blood out as it may damage the sample and render it unusable. Give the lancet a slight twist to make the cut slightly bigger, and increase the blood flow.

I have found this advice very handy when doing the tests for myself and my daughter...she is particularly difficult to obtain a sample from. We had her running up and down the stairs and all sorts...I'm not suggesting your husband does that in his present state! It's well worth doing the test though, and it will also have a vitamin D test included...I can't imagine why that wasn't done.

He certainly has some classic symptoms of having a thyroid disorder. It sounds very much like he has air hunger too. I personally wouldn't bother with the CFS clinic. Chronic fatigue syndrome is just a description of symptoms in my opinion...a bucket diagnosis, and it just gives Drs an excuse to avoid the issue, because they mostly don't understand it. They get you exercising when you're on your last legs, and prescribe loads of unnecessary meds, without investigating the CAUSE of the 'chronic fatigue'. A healthy person doesn't suddenly become fatigued and breathless and feel ill for no reason...there's always a reason for it.

I was never overweight either, yet my thyroid had no output at all. It doesn't always follow that you put on weight...I became unbearably thin because I was nutrient deficient, and couldn't absorb anything. I did develop a collection of mucin around the middle, but that was after many years of being inadequately treated. The numbness and tingling sounds neurological, and may have to do with B vits or mineral levels, but needs to be checked.

Yes, I was told to avoid the Internet too. I told them it was an 'NHS choices' site and I was going to treat myself if they weren't interested. I had been on a high dose of Levo for 25 years and it wasn't working...I needed T3 and I was so ill. I'm well at last, but if I hadn't got daughters that helped me, and I hadn't found this site, I doubt I would be here now, and I don't exaggerate when I say it has saved my life. I had 'ME/CFS'and they had me on all sorts of pharmaceutical meds that I didn't need that only served to make me worse. Astonishing though, that they have left your husband high and dry given his previous health conditions...they have no morals😕

tattybogle
tattybogle in reply to sid3108

Hi sid, don't hold your breath for the CFS/ME clinic....... i was referred to one in 2008 ......... i think it was late 2010 when i got seen.

Been there, bought the t-shirt, nothing positive to say about the experience. sorry.

Pacing your activities is useful, stop before you want to, be consistent about sleep habits , and try to keep some discipline about a bit of fresh air every day. Be kind to yourself. Grow a plant. Learn Qi gong exercises from someone who understands the importance of the breath........

These are all things i've found helpful for dealing with ME type problems.

I didn't learn any of them from the ME clinic. ..... they made me feel like a failure for not getting better, and tried to cure me of my 'fear of exercise'........ I was doing circuit training 2x a week and an hour of Tai Chi every day, and rock climbing before i had to stop...... i loved exercise , always have.

Have now come back to looking at thyroid, and wonder what would have happened if i'd taken more interest in that back in 2008, rather than accepting that my thyroid was fixed with levothyroxine.

Not wanting to send a depressing message, but i remember how much hope i'd put in seeing the ME 'experts' and how dreadfully disappointing/insulting it was when i got there.

sid3108
sid3108 in reply to tattybogle

Hi, thank you for your message. Luckily, I'm already quite cynical about getting anything helpful from the CFS clinic. Though, I think it will be good to have some sort of diagnosis to give to his company?

tattybogle
tattybogle in reply to sid3108

could be interesting. CFS is a diagnosis of exclusion, (because there isn't a test for it), so they can't (or shouldn't !) make a diagnosis until other fatigueing conditions have been ruled out or treated . So if Hypo is suspected but not acknowledged i don't know what happens. Although it looks like a GP would say he doesn't have a thyroid problem based on TSH.

would it be possible to get his full thyroid function FT4/FT3/TSH /antibodies tested before the CFS appt?

i wish i could tell you a CFS/ME diagnosis would help with benefit's , but i often read it doesn't unless you are completely bed bound. However , it may be more use if it's an employer you are dealing with.

Wish i could send you something more useful.......... is a (((( hug ))) any good ? :)

I've had ME ?/+ thyroid disease for 17+ yrs, life hasn't been how i wanted, but i've managed somehow, brought up two lovely kids,had a lot of fun along the way ,(although i am now known as the woman who goes to work (at festivals) in a campervan, so i can have a rest on the way at the services, and watch the band's from bed with the back doors open, while friend's bring me G+T and strawberries, and laugh at me)

Try not to worry, about the future....... it will look after itself somehow.

Best Wishes

Tat

x

sid3108
sid3108 in reply to Mamapea1

So, I booked a private ultrasound for his liver, kidneys and pancreas, which he had on Saturday, and, thankfully, was okay. Following are his Medicheck results for Thyroid panel:

CRP HS: 0.6 mg/l (range <5)

Ferritin: 201 ug/l (range 30-400)

Folate: 8.58 ug/l (range >3.89)

B12 Active: >150 pmol/l (range >37.5)

Vitamin D: 62.4 nmol/l (range 50-175)

TSH: 1.51 miu/l (range 0.27-4.2)

Free T3: 4.79 pmol/l (range 3.1-6.8)

Free Thyroxine: 16.4 pmol/l (range: 12-22)

Thyroglobulin Antibodies: 12.7 kiu/l (range <115)

Thyroid Peroxidase Antibodies: <9 kiu/l (range <34)

Mamapea1
Mamapea1 in reply to sid3108

sid3108 I'm so sorry for not getting back to you sooner...I still have tech problems and can't do messages, and I haven't been at home much, but I was able to find you via this reply😊

I'm glad the ultrasound was ok, but sorry you had to pay privately. I would've thought that your husbands high B12 level would've sounded alarm bells for the GP given his previous medical history, and they would have launched a detailed investigation!

I do think it sounds like he's not absorbing any of the B12, and therefore has symptoms of a severe deficiency. I have experienced that, and it's torture...he has my sympathies. As to why that's happening to him, I have no idea, but further investigations are definitely needed, and maybe look into other areas, stomach, etc. just to rule out anything nasty. SlowDragon has given you some excellent links on your other post, and I think this information should be forwarded to his GP or another specialist as soon as possible, to instigate a full investigation, and hopefully quell your anxieties. Ridiculous that we have to educate them like this, but that's how it is, and no doubt worse than ever with the backlog of untreated patients.

Although he may actually need the B12, I'm not sure if it's a good idea to try sublingual at this point [first time I've ever said that] because the medics will probably blame supplementation for the high levels, and it may hinder them taking action. I don't know if you've posted his results on the PA forum [I can't view profiles atm] if not, it may be worth a try, although they're likely to give the same answers that you've received here.

As for the thyroid results, although they look 'OK', and it seems he doesn't have Hashimotos antibodies, [so that's good] it's still possible to be hypo with normal looking results. I know this because it happened to me for decades, and I fully believed it wasn't the problem, as TSH, T4 and even T3 were all 'in range'.

I was on a high dose of Levo, and it turned out most of my T3 was RT3 [reverse T3] and I wasn't able to convert well, [T4 to T3] or absorb the active T3 at a cellular level...similar to what's possibly happening to your husband now re B12. Because of this resistance to thyroid hormones at a cellular level, I remained essentially severely hypo but with normal blood results, so things are not always what they seem.

The hypothyroidism rendered me unable to absorb any vitamins or minerals, which caused further problems, but my vitamin levels were always LOW on blood tests. My B12 was at the bottom of the range, not below, but my folate had been below range for many years, and it's a cofactor for B12, so I had serious neurological problems, as the B12 was unable to work. I take a high dose of T3 only now to combat the resistance, keep regular checks on my vitamin levels, and I'm well.

I don't know much about the cancer treatments effects on thyroid output, but I'm sure it wouldn't do it any good. My advice would be to sort out the root cause of the B12 problem first and providing all is well, move onto investigating the thyroid, as I don't think you can entirely dismiss the idea. Good luck🍀 and please keep us informed as to his progress x

sid3108
sid3108 in reply to Mamapea1

Thank you so much again. Thanks to SlowDragon's excellent advice, I looked around the internet last night and found that quite a few clinics in the Netherlands test urine for thyroid problems. This one was very interesting: worldhealthlaboratories.com...

I don't know if they are genuine, but I'm assuming so. I will also get an MMA urine test as he finds the blood tests difficult.

I spoke with my sister yesterday about his cfs/me diagnosis, and she said I should stop looking for the source of the problem and treat the symptoms, one day they probably will find the reason! I know... It really upset me, as I am the sort of person who always needs to find the reasons for a problem (she isn't). I explained that many cfs sufferers spend years and years suffering, following NHS treatments. I don't want that for him, it's so awful to see him going through this. I feel very guilty as I'm spending time researching on the internet and spending as much time with my two children as I should at the moment (not at school).

It's all so difficult, but thank you for replying. It really helps.

Mamapea1
Mamapea1 in reply to sid3108

I'm not sure about the urine testing labs I'm afraid, as I haven't had the need to stray far from Regenerus and Medichecks myself, but it may be worth starting a new post to make enquiries first, as I'm sure there must be some others who have needed to use that service. Yes, SlowDragon is one of the many life savers on here.

I'm sorry that your sister has adopted the erroneous attidude of the medical profession regarding 'CFS' etc. She may not be aware of how many members on here have suffered for decades and lost large chunks of their lives by trying to follow the 'treat the symptoms' protocol. Without knowing the root cause of the problem, you are simply flailing around in the dark, and being prescribed meds that could easily make the condition worse...another common experience on here.

Researching everything does take an enormous amount of time, but there's no way round it...hopefully the children are old enough to understand how important it all is. All I can say is that it does get easier as you go along, as you start to learn key words and medical terminology, and have a greater understanding of how the body works in general...in particular, how everything's connected. You will soon be more knowledgeable about these things than your GP, if you're not already!😊

I hope you soon discover why he's not absorbing the B12...the medics should be arranging a full investigation, as a B12 deficiency causes so many physical and mental symptoms, and can be dangerous, even without his previous history. Their ignorance and dedication to Big Pharma, while patients suffer, really annoys me!

You may be aware that there are a couple of members on here that have written books about thyroid/CFS issues. One is Paul Robinson [PaulRobinson on here, and website: paulrobinsonthyroid.com] he has a section on CFS on there, and the other is Hugh Hamilton [HughH on here]...you can search through 'members' for them, if you haven't come across them yet, but tbh, there's so much to read at the beginning it can be daunting. My house is like a library, with paper print outs and books everywhere! Thank goodness my children are grown up, and I only have the grandchildren to look after occasionally!

It's so worth doing though, as what you learn stays with you and puts you in a better position to not only maintain your own family's health, but to ward off the misinformation often given out by Drs. I can assure your sister that in my experience, I firmly believe that even if they did find the reason for it all, unless there was a lot of money in it for them, they would not share the information with us. Good luck, take care, and don't get too worn out. x

PS just in case you don't know, and you want to alert a particular member, if you put an @ directly in front of the user name of that member, a list of possible choices should appear at the bottom? [on an iPad] of the screen, and if you click on the name on the list, it will appear blue on the text and they will be alerted to your post. x

sid3108
sid3108 in reply to Mamapea1

Hi, thank you so much, once again. My children, who are adopted, are 11 and 9, and unfortunately, have their own issues, but they are also amazing, so at times have been a huge comfort to me recently (not always!)

From his long list of symptoms, I'm convinced the problem is connected to thyroid and possible very slow damage to cells from chemotherapy years ago? I will keep researching, the Paul Robinson information looks very interesting.

I am trying to be positive and I tell him he will get better as he is so depressed now. His daughters need him.

Thank you again, you have been a great help!

Mamapea1
Mamapea1 in reply to sid3108

You're more than welcome. Apologies for being unable to provide links at present. It does sound feasible that cell damage could occur over time, but I don't know enough about the treatment to advise.

I hope your research provides some answers soon so he can find a way forward...it's awful when you feel so desperately ill with no real answers or a plan.

You will get no help from the GP or CFS clinic if it turns out to be thyroid related...as you can see by the sheer amount of members on here. Healthy, appropriately medicated thyroid patients tend not to bother joining forums searching for answers, they just get on with their lives. And there's many more than this, but they all believe they have other conditions, as I did. It's criminal in my opinion.

Of course, if ME/CFS is the diagnosis he's been given, then that's what you have to put on all the forms, [thickly] but make sure the medics don't stop investigating any potentially serious problems. It sounds like you really have your hands full with it all😕 I'm glad you've found this forum though...best thing that ever happened to me x

sid3108
sid3108 in reply to Mamapea1

Thank you so much x

Mamapea1
Mamapea1 in reply to sid3108

Apologies, SD's replies are on THIS post😳 This iPad has me in a spin atm!😊 x

Sorry, no he didn't take any supplements.

Hello, my husband did Active B12 test using Medichecks. Result came in as:

VITAMIN B12 - ACTIVE

16 Jun 2020

>150

pmol/L

> 37.5 R

I'm confused as it doesn't give a result, just that it's over 150pmol/l. This was doctor's comment: I am pleased to report you have sufficient levels of active B12.

When he had serum B12 done in March (NHS), it was 1350ng/l, which is obviously very high. Can I now assume his B12 isn't a problem? I haven't had any response from GP.

Mamapea1
Mamapea1 in reply to sid3108

Did you provide any details of symptoms or reasons for testing to the Medichecks Dr? If not, they may have assumed your husband was supplementing B12, and have therefore just given just a general comment x

helvella
helvellaAdministrator in reply to sid3108

>150 simply means it is so high that it is above the top value for which the test is accurate.

> 37.5 looks like the bottom end for the Active B12 test. Below that, there is a deficiency.

Very high B12 needs to be looked at. If supplementing regularly, it might be fine. If not supplementing, it could indicate problems. I am no expert so do not wish to go off speculating but it should not be ignored without a known cause.

I reckon he has difficulty in using up B12 and that is why it is so high. SO perhaps take even more b12 to see if that clears up his headaches and stuff. If not then stop if it makes no difference. There won't be any harm in taking any extra. Take 2000 sublingual a day for a few weeks and see if it helps.

Hi, what worries me about supplementing is that his Active and Serum look to be high. I've booked a private scan on his liver and kidneys; GPs said his blood tests for these were okay. Hopefully, we will find something that helps soon.

Hi, my husband has a telephone consultation with the cfs clinic on 16th July. It's at 9.30am, which will be interesting, as he's slept til 1pm every day for the past 6 weeks. I'm not holding out much hope for treatment; I'm thinking it will be me that has to seek out alternatives to help him. Sorry, not sure what PEM is? Still waiting for nurse to come from Medicheck to take his blood for full Thyroid test.

Not yet. We're awaiting Medichecks blood test - thryroid, Active B12 (again), Vit D & CPR markers. His Iron was okay. I've found quite a lot of information re. chemo he had for Hodgkins Lymphoma 16 years ago and damage to the body years or decades later (inc. thyroid). One forum I went on had lots of people who've had chemo for HD and have all these symptoms years later. Scary.

An update on my husband:

I posted on here a few weeks ago re. my husband's illness. He has been very ill for the past year, started with migraines, then six months ago, tiredness, which became extreme fatigue when lockdown started. He has blurred vision, very bad muscle pain in back, tingling arms and legs, freezing cold hands and feet that turn blue, depression and dizziness. He had Hodgkins Lymphoma in 2004. To say his GP/Surgery have been hopeless, would be an understatement. He can't work at the moment (luckily still furloughed). He had a very high serum B12 result, which I found on his NHS blood results, after asking for them (3 months after taken) following advice on here. His GP has done nothing, except refer him for a liver scan, which he can't have as they are not doing them at the moment! He has a telephone consultation with CFS clinic on Thursday 16th July.

So, I booked a private ultrasound for his liver, kidneys and pancreas, which he had on Saturday, and, thankfully, was okay. Following are his Medicheck results for Thyroid panel:

CRP HS: 0.6 mg/l (range <5)

Ferritin: 201 ug/l (range 30-400)

Folate: 8.58 ug/l (range >3.89)

B12 Active: >150 pmol/l (range >37.5)

Vitamin D: 62.4 nmol/l (range 50-175)

TSH: 1.51 miu/l (range 0.27-4.2)

Free T3: 4.79 pmol/l (range 3.1-6.8)

Free Thyroxine: 16.4 pmol/l (range: 12-22)

Thyroglobulin Antibodies: 12.7 kiu/l (range <115)

Thyroid Peroxidase Antibodies: <9 kiu/l (range <34)

Any advice would be very welcome.

SlowDragon
SlowDragonAdministrator

Suggest you consider getting MMA and homocysteine tested

With high B12 ....MMA and homocysteine should be low

But if these are high .....suggests Functional B12 deficiency

academic.oup.com/qjmed/arti...

Testing MMA and homocysteine here

nutris.viapath.co.uk/pages/...

Were saliva adrenal results completely “normal “?

sid3108
sid3108 in reply to SlowDragon

Thank you. I will do this - I found a urine test for the MMA, do you think this will be okay? My husband is so weak, he is finding the blood tests difficult to do.

sid3108
sid3108 in reply to SlowDragon

His saliva adrenal tests were okay, Cortisol/DHEA was slightly above range, but the practitioner said it was all okay and he didn't think adrenals were causing his problems. He did suggest testing gut flora.

humanbean
humanbean in reply to sid3108

His saliva adrenal tests were okay, Cortisol/DHEA was slightly above range, but the practitioner said it was all okay and he didn't think adrenals were causing his problems. He did suggest testing gut flora.

Have you posted your husband's Cortisol and DHEA anywhere? I'm not saying I can add anything useful, but it would be good to see them just in case anything leaps out at me.

The only thing that I did notice is that you wrote in one of your posts that he had more energy in the evening. Getting one's second-wind in the evening is a classic symptom of adrenal problems, whethr cortisol is low or high.

I would re-iterate all the advice you've had already to not get your hopes up about the ME/CFS clinic. They tend to blame people's health problems on "faulty illness beliefs" and try to force people to exercise even if it makes the patient worse. The advice given to patients is to "push through" because they have a mental problem not a physical problem. It's wall-to-wall gaslighting and it is very, very cruel. The advice given almost always makes people worse and sometimes turns people who are mildly or moderately ill into bedbound and severely ill people.

I'd also agree with the suggestions you've had to buy your own Levothyroxine (T4) or T3 or NDT. It might help. Be aware that doctors will imply that thyroid hormones will make people very ill, and are very dangerous.

You can look up "Drug Analysis Prints" on the MHRA website that give you information on the adverse effects doctors and patients have reported for different drugs since the MHRA (or its predecessors) started collecting data in 1967.

info.mhra.gov.uk/drug-analy...

If you look up Levothyroxine (T4) and Liothyronine (T3) you'll find that between 1967 and 2020 there have been 19 fatal reactions to T4 and no fatal reactions to T3.

Compare that to simvastatin, a drug which has been prescribed many times since 1989, and there are 131 fatal reports.

I accept that the MHRAs data is far from complete - but its the best we have available.

Mamapea1
Mamapea1 in reply to humanbean

Hear hear! Well said! 👏🏼 👏🏼

sid3108
sid3108 in reply to humanbean

Hi, Thank you so much. Here are his Cortisol/DHEA results:

Adrenal Function Profile - 15/6/20

Cortisol 1

11.7 nmol/L

NORMAL RANGE

3.0 - 16.0

Cortisol 2

11.7 nmol/L

NORMAL RANGE

9.0 - 26.0

Cortisol 3

10.6 nmol/L

NORMAL RANGE

5.0 - 19.0

Cortisol 4

4.9 nmol/L

NORMAL RANGE

3.0 - 9.0

Cortisol 5

0.6 nmol/L

NORMAL RANGE

0.5 - 4.0

DHEA am

0.52 nmol/L

NORMAL RANGE

0.20 - 1.67

DHEA pm

0.32 nmol/L

NORMAL RANGE

0.17 - 0.91

Cortisol

Daily Total

39.5

NORMAL RANGE

20.5 - 74.0

Cortisol

DHEA Ratio

66.0

NORMAL RANGE

38.3 - 64.3

Re. thyroid, do you think trying NDT just to see if it helps might be a good idea? As you say, other drugs that are prescribed far too easily, can be much more dangerous.

Thank you again.

SlowDragon
SlowDragonAdministrator

High B12 and couple of articles about possible link to Hodgkins

ashpublications.org/blood/a...

Rather heavy article

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

SlowDragon
SlowDragonAdministrator

Perhaps look at urine thyroid test as discussed in this post

healthunlocked.com/thyroidu...

sid3108
sid3108 in reply to SlowDragon

Hi, thank you so much for this. I started reading about it last night; my husband has so many of the symptoms for hypothyroidism, I just can't understand why his results didn't show anything. Well, I found the following and wonder what you think about it. It seems The Netherlands have quite a few clinics that test urine for thyroid problems: worldhealthlaboratories.com...

I might contact them for more information.

Thanks again.

sid3108
sid3108 in reply to sid3108

Sorry, me again, I also found this one: keac.nl/product/schildklier...

SlowDragon
SlowDragonAdministrator in reply to sid3108

You can use Genoeva testing

gdx.net/uk/product/urine-th...

And Thyroid UK can be listed as the required practitioner

thyroiduk.org/getting-a-dia...

sid3108
sid3108 in reply to SlowDragon

Ah, that's good to know, thank you.

I'd just like to say , sid, You are already doing one of the best thing's possible for your husband by showing you believe him. so don't beat yourself up if you need to focus on the children , (or yourself :) )

i'm my experience, the feeling of sometimes not being believed/heard/understood by doctors , or friend's or even sometimes family that live with you, can eventually leave you feeling unsupported , unacknowledged, and questioning your own worth/ sanity , in a way that wouldn't happen when trying to deal with the challenges imposed by a health problem with a different 'label'

And the damage this can do to someones self confidence is almost more damaging than the health problem itself.

sid3108
sid3108 in reply to tattybogle

Thank you so much, your kind words have definitely made a difference to how I'm feeling at the moment.

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