GP thinks my memory and concentration issues are fibromyalgia or CFS not thyroid

[TheSnufkin]

Hi all

I posted a few weeks ago about my first GP's reluctance to prescribe thyroid medication healthunlocked.com/thyroidu...

and then how I was prescribed a very low dose of levo (25mg) by a second GP healthunlocked.com/thyroidu...

I have just been back after 6 weeks on 25mg of levo and my TSH levels are down and my T4 levels are up so both are now within the normal range. I also had B12/Folate/Ferritin/Blood Count tests done.

I do feel slightly better exhaustion-wise, I'm now less tired all the time and can go for a short walk without feeling I'm about to pass out, but my brain fog is as bad as ever. I can't concentrate, my attention span is pretty much extinct and I constantly forget words. I work in a fairly academic setting and I don't have the attention, concentration or words to do my job.

Results are below

Thyroid

Serum TSH 1.841 mU/L (range 0.57-3.6)

Free T4 8.7 pmol/L (range 7.9-14.0)

Iron (GP note "borderline low transferrin saturation")

Serum Iron Level 14 umol/L (range 2-32)

Serum TIBC 65 umol/L (range 28-54)

Iron Transferrin Sat 21.5% (range 22-36)

Blood haematinic levels

Serum B12 213 ng/L (normal range above 203ng/L which is equivalent to 150 pmol/L)

Serum folate 6.3 ug/L (normal above 4.0 which is equivalent to 10 nmol/L)

Serum Ferritin 18 ug/L (normal range 11-307). This has dropped from 28 in June

Edited to add Vitamin D level from June

Serum Vit D3 level 71.5 nmol/L (normal range 50-)

Blood Count

I'm posting the blood counts as images in a separate reply as there are too many to go through and I can't copy and paste the text. However I'm in the abnormal ranges for

Red blood cell distribution width 14.3% (11.6-14)

Eosinophil 0.0 (0.02-0.5)

So the GP said he would put the levo dose up to 50 as 25 was an almost clinically insignificant dose. But he said that he thinks my brain fog and attention issues are nothing to do with hypothyroid and that my B12 is normal so it can't be that. He then said he'd discussed my case with the other GPs (he's only been in post two months) and that they think that I have fibromyalgia or CFS.

Firstly, bearing in mind a lot of what people have said on here and on other forums that there's so much misdiagnosis of CFS etc when actually it's hypothyroidism, what do you think the chance is that I have both?

Secondly, looking at my iron and B12 test results I'm on the borderline or abnormal for both, should I be supplementing? If so what with, what is most likely to work for me.

If you've got this far, thanks for reading, I appreciate it!

[TheSnufkin]

Blood count results sheet 1

Blood count results sheet 1

[TheSnufkin in reply to TheSnufkin]

Blood count sheet 2

Blood count results sheet 2

[TheSnufkin in reply to TheSnufkin]

Blood count results sheet 3

Blood count results sheet 3

[greygoose]

Well, pretty certain that you have both CFS and fibro, but they are syndromes, not diseases. A syndrome is a bunch of symptoms. Symptoms have to be caused by something. And, as you know you have hypo, and that you are on a rediculously low dose of thyroid hormone replacement, the odds are that your CFS and fibro are caused by low FT3. Which they don't even test! But your FT4 is low so it's reasonable to assume that your FT3 is even lower.

my B12 is normal

No it's not. It's dangerously low. And they don't even give a proper range! But, with a B12 that low, you should be tested for Pernicious Anemia. Serum B12 should be at least over 550, or you risk irreversable neurological damage. But doctors know even less about nutrients than they do about thyroid!

Your folate and ferritin are also too low. No vit D result?

[TheSnufkin in reply to greygoose]

Argh, how on earth can I get my doctor to take this seriously? Basically computer says no with regard to my B12 levels etc so they won't do anything because they are normal. I really pushed on this saying that the level was only just above the range limit, but he told me to get myself to Holland and Barratt for iron and B12 supplements, but didn't even give any guidance on what I should be looking for.

I'm so bl**dy cross!

Re vit D that was done in June and the level was Serum Vit D3 level 71.5 nmol/L (normal range 50-)

What should I be doing next? Why do the "normal" ranges for B12 etc include levels that are actually dangerously low? Help!

[greygoose]

Why do the "normal" ranges for B12 etc include levels that are actually dangerously low?

Very good question. And to answer that, you need to know the dubious system by which ranges are set. Have a look at this article, it will explain all:

The normal range: it is not normal and it is not a rangeThe normal range: it is not normal and it is not a range

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

Your doctor might benefit from reading it, too!

But whatever you do, do not go to H&B for supplements. Most of them are rubbish.

didn't even give any guidance on what I should be looking for.

Because he doesn't know. Doctors don't have a clue when it comes to nutrients. That's why they have to rely on the computer to tell them what to do. But, whoever programmed the computer didn't know, either!

Your vit D is also low. So, if I were you, I would post a new question asking about supplementing sub-optimal nutrients levels, giving your nutrient blood test results and the ranges. Then, those that know can answer.

[TheSnufkin in reply to greygoose]

Thankyou, especially for the article about "normal" and "ranges". Urgh,

I will repost asking for help with suboptimal levels. Thanks again greygoose, appreciate you taking the time to help

[greygoose in reply to TheSnufkin]

You're welcome.

[DippyDame in reply to greygoose]

Good article greygoose....thank you.

Today I was told to take vit C with Hiprex for chronic uti.

I asked how much vit C...

Flustered response....oh those big tablets that dissolve.

But how much vit C do they contain?

It will tell you on the container.

I was also told my nutrient results were " normal"...they are anything but satisfactory!

Normal for whom, I asked....

Blank expression

Health care!!!!

They are flying by the seat of their pants.

We have to do our own research and heaven help those that are unable to do so.

Last week I went to see my friend of over 60 years, now in a care home and far gone with dementia. I'm convinced her doctors missed something by considering rubbish results to be normal.

Sorry I'm ranting but the whole thing makes me see red

[greygoose in reply to DippyDame]

Makes me see red, too. They are playing with our lives but they have no idea what they're doing! Like the doctor that told me that as I was getting older, I should eat more yoghurt for my bones. I said 'how much more?' (trick question!). She said 'how the hell should I know!' I said, 'well, actually, I don't eat any at all, I don't like it'. 🤣🤣🤣 She got quite cross. lol

[Brightness14 in reply to greygoose]

Sounds like a plan I have an appointment tomorrow I will ask about the yogurt.

[greygoose in reply to Brightness14]

Ummm... I think you completely missed the point of my anacdote. Yoghurt has got nothing to do with anything. It was just an example of how they say these pointless, meaningless, vague things and get upset when you want precision - following on from DD's story about the vit C.

Sorry about that.

[Brightness14 in reply to greygoose]

I did get the point I was just having a joke I thought your remarks funny. My GP just sings to me I really don't get it.

[greygoose in reply to Brightness14]

OK, sorry. One never knows on here! lol

Your GP sings to you? Grand opera or low pop? I don't think I'd like that...

[Brightness14 in reply to greygoose]

Mostly some type of chanting, terrible, but apart from that he is not too bad as GP's go.

[greygoose in reply to Brightness14]

Sounds weird.

[Brightness14 in reply to greygoose]

He is weird today he chanted again. I am not sure if it's because he comes from Mauritius, perhaps not. Maybe he thinks it helps with divine intervention.

[HealthStarDust in reply to Brightness14]

This reminds me of the GP in the Netflix series Painkiller.

[Brightness14 in reply to HealthStarDust]

I never saw it but it sounds to good to miss.

[HealthStarDust in reply to Brightness14]

It covered the dangerous of the opiate crisis in America due to Big Pharma. Very watchable.

I watch all sorts while half awake on my sofa life while I wait for the medication to start working!

[greygoose in reply to Brightness14]

Who knows! lol

[FancyPants54 in reply to DippyDame]

We do have to be our own advocates for sure. The problem is those who can't afford to. Those who don't have the mental capacity to do it and those who think every doctor is right because they are a doctor, mainly the older generation I suppose.

[buddy99 in reply to FancyPants54]

You might be right about seniors there. My doctor prefers to take seniors as patients. I assume it is because they don't raise a fuss or ask questions; fast and easy. I'm a senior who had much damage done by doctors, which made me a pain in the rear end for doctors. I usually have lots of questions and many doubts. When that doctor took me on, he did not see this coming and he is trying his best to break me, mostly with intimidation and humiliation. He has an extremely short fuse and lots to say about the incompetence of laypeople. So we are on equal footing because I have just as much to say about incompetent doctors. Only he says these things to me and I don't say them to him.

[waveylines in reply to buddy99]

Have to say my GP would regard me as senior but I'm anything BUT passive. I reckon they draw strawers before ringing me... (face to face is a myth in my Surgery) I don't care just live in a faint hope that they do their research properly (yet to see) & at least do what I suggest... Usually keenish if the screen allows them. All hail to the screens!!Such is the fear of actually meeting a patient that these days you have to go onto NHS app request a form fill it in for which you take liability if you fail to put anything on it that might mean they miss diagnosis (always the patients fault!!) , then you get a questionaire after that and after that a text or you may EVEN get a phone call but u don't know if you will. The response they say can take up to 6 weeks but you don't know whether it will or won't. The system is broken. GPs are no more than paper pushers and blindly follow computer screens, disconnected from real.Patients . Am waiting for AI services to start. Reckon it's close.

[buddy99 in reply to waveylines]

You never know, AI might be more competent than a doctor. But then again, if they operate on the same programming as doctors, we are still not getting anywhere. At least they might keep emotions out of it, like angry outbursts or condescension. 😜

[waveylines in reply to buddy99]

Maybe able to give the AI software a breakdown if not!! 😂🤣

[FancyPants54 in reply to buddy99]

Perhaps you should let your mouth relay your thoughts one of these days!

[buddy99 in reply to FancyPants54]

Do you mean I should tell HIM what I think of the incompetence of doctors? That's a terrifying thought. You should see this guy when I want more information on something. I'm not sure he wouldn't beat the life out of me, if I ever shared my thoughts about the medical system. In fact after my last encounter with him, I will only go back if I have absolutely no other choice and only accompanied by my son as a witness and for protection. I'm not kidding. My last visit was the horror. I was scared stiff. I thought he would strike me and am sure he would have, if that would not end his career as a doctor. He is super frustrated. My assumption is that he can not cope with being an orthopedic surgeon who has to work as a general practioner, possibly because there are only limited positions available in his specialization (or for more sinister reasons [?] given his temper).

[FancyPants54 in reply to buddy99]

Jesus! Report him to the Medical Council. He needs striking off! You are right then. Don't go back without support. Can you switch to a different surgery?

[buddy99 in reply to FancyPants54]

Unfortunately many people here in Manitoba don't have a doctor. They are in short supply. So I am "very fortunate" to have one. We have a great number of walk-in clinics, where people, who have no doctors, can go. Those doctors constantly change. Some work in multiple clinics. They are just "Band-Aids". They don't know the patient and don't offer any long term care. It's a one visit thing. I'm also sure that my medical records would make him look the victim. I can't imagine him writing, "I stood over her with my arms crossed over my chest and yelled at her for 10 minutes. And I did not ease up even as I walked out the door." 🤣 If I report him, it's his word against mine. I'm 99% sure he would go unscathed and no other doctor would have me. But, boy, are we ever getting off topic!

[FancyPants54 in reply to buddy99]

I had to look up Manitoba to see where you are! Are you aware of the Canadian thyroid patient advocate blog site thyroidpatients.ca

It's excellent. There is also a great Facebook group that goes with it. Look on FB for facebook.com/groups/4689647... Thyroid Patients Canada Support. That's like this, a patient forum full of very experienced admins and the Wonder Woman herself Tania Sona Smith who is the writer of the blog and the originator of the FB group.

If you joined the FB group you could ask others in your area of Canada if they can recommend anyone for you to consult with. (although I have suddenly realised I don't now if you are hypothyroid. I've just been writing extensively about that and conflated you with the condition. I think you are B12, but could have a related thyroid issue. Anyway, B12 is vitally important to thyroid health so if you search the blog pages you will find information about B12 that might be useful to you.

Sorry if I've gone off on a tangent there that you didn't need.

[buddy99 in reply to FancyPants54]

Thank you, FP, for pointing me in that direction. Yes, I am familiar with the website and have saved many of the publications in my "favourites" file. It is pretty awesome and I always need to set aside enough time to fully appreciate everything that is said in those articles. Just like a doctor I don't want to come off as a total idiot, but I find those very tough to digest. I was able to glean one or the other thing from them, though. Tania is really researching the heck out of thyroid conditions, especially on the subject of T3. I laughed when I saw her thank you letter to the good thyroid doctors, whom she could not name, in order to not get them into deep trouble. They, who can not be named (this time because they are the good ones).

[FancyPants54 in reply to buddy99]

The complex nature of her articles is why I like the Facebook forum too. I can ask questions about the bits I don't understand on there.

It's ridiculous that we have to work so hard to try to get well. While the doctors just come out with the same old dialogue they learned years ago time after time.

[buddy99 in reply to FancyPants54]

It's because doctors don't know how to interpret research. My doctor's words not mine. He was on the laypeople rant and said that even he, as a doctor, does not know how to interpret research (and we weren't even talking about research but about an info pamphlet). Anyway, that explained a lot. He really gave himself away there, didn't he?

[Joant24 in reply to DippyDame]

Can I ask why Vit C with Hiprex as I take them too and no one mentioned this. Thank you and sorry to piggyback on your this post 🥰

[DippyDame in reply to Joant24]

Hiprex works best when your urine is acidic.

Some take D-mannose wirh cranberry for the same reason

i discovered that my urine was very alkaline (dipstick test) which may explain why Hiprex alone wasn't effective.

About to start another trial of Hiprex +Vit C....and to give it more time!!

[Joant24 in reply to DippyDame]

I only have to miss one Hoprex tablet and my Ecoli have a party!

[FancyPants54]

That B12 level is bad. It really does need a much more thorough investigation. And the investigation needs to happen before you supplement. Supplements fill the blood with B12 but that's no sign it's being absorbed into the cells.

Is there a different GP in the practice that you like more that you feel you could go and talk too and ask for help from?

[TheSnufkin in reply to FancyPants54]

Unfortunately, the GP is new and quite young and has already taken my "case" to a practice meeting and apparently they were all pushing him to tell me that it's not really thyroid or B12 that's causing the problem but is "CFS/fibromyalgia", so I don't think I will get a different answer from a different GP at the practice. I honestly don't know where to go next.

Next appointment is in a month after more TSH/T4 blood tests in 3 weeks

[FancyPants54 in reply to TheSnufkin]

You really need T3 testing at the same time too. This practice is going to keep you sick. Are there alternatives around that you could join?

[waveylines in reply to TheSnufkin]

I'd contact the Pernicious Anemia society. In the past they have been known to ring your GP with your consent. Secondly go on B12d. Org and do their assessment sheet and print off for GP. The B12 assay is missing a significant proportion of B12 deficiency these days as the new machinsry they brought in that does multiple testing is flawed. Labs are aware of this. On top of this the bottom of the range is set ridiculously low. Download Dr Chandry book on B12 deficiency. It's free on the same website.

I too had a simular reading to yours. I felt terrible. Incredibly weak, tired all the time, numbness, tingling, blurred vision, tremors, struggling to walk up down stairs.....dreadful memory and processing. . My GP couldn't prescribe. She could refer me to neurology but that was a seven months wait. She did refer but I told her I wasn't waiting and started b12 jabs myself. She looked relieved. 3 months later went back to see her. She said don't say anything your on the b12 jabs and the difference is incredible. Still couldn't prescribe though! Waited seven months saw neurologist who agreed with me and prescribed daily b12 jabs. Took NHS another three months to sort that out. So glad I started my own treatment.

At the very least your GP should test for Intrinsic Factor (only picks up 50% of PA.) Should be checking your homeostaine level as well as full red blood count.

Don't give up. I was formerly diagnosed with CFS/ME. In actual fact I had Hypothyroidism, B12 deficiency and am gluten intolerant, likely coelacs.

[TheSnufkin in reply to waveylines]

Thanks so much for all this advice. I'm so pleased that you were able to find out what the problem was and then do what was needed even if you had to bypass the GP. What is going on with the NHS and endocrine stuff is just awful, if you and I are examples, there are a lot of people around who are needlessly suffering.

[HowNowWhatNow in reply to TheSnufkin]

Tens of thousands

[Niadancer in reply to FancyPants54]

You need to avoid all vit b12 for four months before testing according to the people on the vit b12/pernicious anemia groups, in order to get a proper blood result

[tattybogle]

TSH is in normal range ( but still a bit too high for optimal, see how you feel with TSH 1 or under )

fT4 is ( just ) in normal range , but still pathetic... so it's good the GP has increased dose to 50mcg.

See how that goes for the next 6-8 weeks, then get retested.

depending on TSH / fT4 results on 50 mcg , you may need to use these references to push for further Levo increases : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

Explanation of why TSH 'in range' is not the same as 'optimal' : healthunlocked.com/thyroidu... the-shoe-size-analogy.

Continue to push GP's to get your thyroid results optimal (and the vit b sorted ) before they write off remaining brain fog etc as CFS/ME / fibro .. it;s too easy for GP's to use those as a cop-out diagnosis... don't let them go there until they really have sorted / investigated 'everything else' first.

[TheSnufkin in reply to tattybogle]

Thankyou. It's concerning that they just want to ascribe everything to a condition that has no cure and no real treatment unlike hormonal conditions that can be treated. So angry

[DippyDame in reply to TheSnufkin]

I understand your concern having just been given nutrient results which look awful but have been reported as " satisfactory".

They just don't understand that being in range (whether nutrients or thyroid hormones) is not good enough.

Again, we have to learn and self treat.

I was also diagnosed with Fibro and CFS over 20 years ago as the syndromes were emerging....never trusted that diagnosis. Turned out my cellular T3 was low...a long saga detailed in my bio. That has caused me all sorts of problems over the years

Your FT4 is far too low so I'd be fairly confident your FT3 is also too low.

For good health almost every cell in the body needs to be flooded with T3 by way of an adequate and constant supply.

Low cellular T3 = poor health.

It beggars belief!

[FancyPants54 in reply to TheSnufkin]

It allows them to give up trying. Don't accept it. Say you won't accept that diagnosis and that you want much more help with your thyroid and associated co-factors of B12, Vitamin D, Iron and Ferritin.

Also, depending on your age, your female hormones might be playing fast and loose with you and might need addressing. All hormones work in tandem. You can't ignore one set and concentrate on another.

Push as hard as you can or you will be left on your own. It's really hard. It should not be this hard.

[Polo22 in reply to FancyPants54]

Every time I hear Cold Plays The Scientist , brings a tear to my old tired eyes

"Nobody said it was easy

No one ever said it would be this hard

Oh, take me back to the start" 😢

[FancyPants54 in reply to Polo22]

Very apt. I hadn't connected the song with our struggles to get well again before. Nice one.

[waveylines in reply to TheSnufkin]

They've been doing this for years Snufkin. Even though my problems are now addressed no thanks to GPs but me pushing my case forward I was diagnosed CFS/ME 25yrs ago. Even when my true conditions are addressed they won't drop the CFS/ME diagnosis off..... instead say the other conditions are a consequence! What nonsense!I've learnt whatever am told by a doctor to question and challenge....often they are wrong. The good ones listen, most don't. I'm also not afraid to go off piste anymore.... On the two occasions I've had to my health has improved immeasurably and in the end doctors have had to admit my decisions were benificial and correct. In fairness GPs hands are tied so much by protocols that they have to follow or will be in trouble with the GMC. Those protocols get in the way of true analytical doctoring.

Besides which bare in mind doctors receive no training on vitamins and minerals. None!

So a healthy skeptism and doing lots of reading is truly necessary if you are poorly & want to be well these days. Sad fact!

[HowNowWhatNow in reply to TheSnufkin]

No cure or treatment and no clear tests for diagnosis - a waste bin condition.

[FancyPants54 in reply to HowNowWhatNow]

It's just lazy. A failure to diagnose properly and get on with helping the patient get better. They are invented conditions. But people get labelled and are convinced they have them and then don't look for anything else. If, like me, all the energy has just gone out, then it's a mitochondrial problem and it can be fixed. If only they would learn about it.

[HowNowWhatNow in reply to FancyPants54]

Couldn’t agree more.

And if you went to your GP saying I think I have CFS, they’d say you were probably depressed.

Can you please explain what your own problem is, for people like me who are ignorant of such things and might usefully learn something?

[FancyPants54 in reply to HowNowWhatNow]

I developed hypothyroidism as I became perimenopausal. But my hypothyroidism is not helped by Levothyroxine. On the medication I just got fatter and slower and more sad and miserable. My life went from always busy and hardly having time to sit down to never able to do anything and not getting off the chair. And it happened very fast.

Once the Levothyroxine level was deemed "fine" by the GP that was it. The fact that I felt horrible, anxious and frightened and still had no energy was irrelevant. I was sent away until the next set of symptoms overwhelmed me and I'd go back for more not very useful help. I realised early on I was going to have to try to sort this myself.

I learnt all I could about hypo and then I took private tests. I discovered I had a genetic fault inherited from one parent that makes it harder for my body to produce the enzymes needed to convert thyroid hormone T4 into the active thyroid hormone T3. This fault is within a lot of us, but tends to start making problems at menopause. Having this problem means I would need to add some T3 medication to the Levothyroxine to feel better. But the NHS won't accept the genetic test as evidence and refuses to give T3 to many people. They say it's not necessary. But it's literally our life force. So then I had to learn about T3 and eventually buy/import some and try it. Then I had to learn how to dose it and experiment with adding it to my Levo or taking it on it's own. All the while I needed to monitor results of the changes I was making so I had to pay for private tests. I have paid to see various specialists. It's expensive.

Along the way I've had to learn about how important some vitamin and mineral levels are to support the conversion of those hormones. And I've had to buy them and pay for tests.

I now have a private endocrinologist to help me with the fallout of being sick for 9 years and to try to stop me becoming diabetic while I try to sort out the other things. Now I'm using natural desiccated thyroid medication instead of synthetic Levothyroxine and T3. I have to buy it! And I suspect I might be deficient in vitamin B12 despite high blood levels. I have a lot of symptoms of deficiency and so I'm trialing injecting B12 as tablets don't seem to work for me (or many others) for various reasons. Guess what? I have to buy the B12 and all the kit to inject it. Meanwhile my life and hobbies and business languish year on year. It's so frustrating.

[HowNowWhatNow in reply to FancyPants54]

It’s like you’re describing state-sponsored cruelty. Well done for persisting.

[SlowDragon Administrator]

Supplement advice on your follow up post here

healthunlocked.com/thyroidu...

[JAmanda]

See how you go with the extra levothyroxine - it may well help!

[csj113]

Ok so I won’t add anything to the advice you’ve been given on B12 which is another issue - yes you need an antibody test for Pernicious Anaemia.

However your Ferritin is technically extremely deficient and actually your GP practice have not read the latest guidelines on Ferritin deficiency or they would know that.

Buy Ferrous Fumarate otc from your local chemist (it’ll be cheaper than Holland and Barrett). Take one per day max, away from food and tea/coffee. One every second day if you get an upset stomach. Previous advice has been to take with a Vit C tablet or orange juice to aid absorption but in fact the research is showing that might not make much difference: however it won’t do any harm.

You want Ferritin 70 plus at the very least. This alone could account for your ongoing symptoms. Your GP should also be exploring why there is such a big drop in just a couple of months (reasons inc v heavy periods).

[Brightness14]

Have you had your adrenals tested. The saliva 4 point test is the one to go for. This could help you. All these gland should work together.

[TheSnufkin in reply to Brightness14]

I had the synthroid test in 2016 and the results apparently showed that there was no issue with my adrenals. I don't have the figures to hand (in fact I'm not sure I was ever shown them).

Interestingly the endocrinologist I saw then pointed out my high thyroid antibody levels and said that the GP should be testing me for thyroid issues every 6 months or so because it was likely I would end up hypothyroid despite my levels being OK then. Of course, this never happened!

[FancyPants54 in reply to TheSnufkin]

Synthroid is an American thyroid medication. It's not a test for anything. I think you maybe misremembered?

[helvella in reply to FancyPants54]

I suspect: Short Synacthen Test (SST)

Maybe autocorrect?

[FancyPants54 in reply to helvella]

Something like that. Good spotting. I was just baffled.

[TheSnufkin in reply to FancyPants54]

Argh, that's my brain fail in action. I have no idea why I said synthroid, it was the synacthen test with an infusion and blood tests before and after. So yes, you're right it was the SST.

[FancyPants54 in reply to TheSnufkin]

helvella was on the ball.

[WaystarRoyco]

I can’t add anything to the advice. However I just want to say that I was also diagnosed as having ME/CFS and have wondered if it’s just a cop-out diagnosis.

[TheSnufkin in reply to WaystarRoyco]

I really do think it is. There is no treatment for it so they don't have to bother trying to help people get better. It's appalling the way people are being treated.

[WaystarRoyco in reply to TheSnufkin]

I agree wholeheartedly.

[Sparklingsunshine in reply to TheSnufkin]

Its the modern day version of hysteria. No cure, no treatment, mainly a female issue, I think the Fibro/CFS diagnosis has now been superseded by Functional Neurological Disorder, which is yet another waste bin diagnosis doctors seem to love.

[FancyPants54 in reply to Sparklingsunshine]

That's a new one on me.

The Hysteria of old would also have covered those having a terrible menopause. Often menopause is terrible because someone is already sick with hypothyroidism, B12 deficiency, adrenal issues etc. I often think of the woman in the attic in Jayne Ayre. And Bedlam was full of women going into and in menopause.

[Sparklingsunshine in reply to FancyPants54]

Just being a "difficult" woman could see you being committed years ago. Guessing a fair few forum members might have seen the inside of an asylum in the good ole days lol.

[Sparklingsunshine in reply to Sparklingsunshine]

Yes FND is the new kid on the block, its a useful catch all diagnosis that covers chronic pain, fits that are non epileptic in origin, any limb that doesn't work as it should, due to weakness, numbness etc.

Used to be called conversion disorder ie you converted mental anguish into a physical problem. Now its got a more politically correct shiny new name but the thinking from medics about cause and effect remains the same.

Its anxiety and or depression causing the condition, because that's all they have. It couldn't possibly be an issue with the body. We really haven't moved on from when wandering wombs were believed to be at the root of women's problems. And yes you've guessed it, FND affects more women than men.

[SilverSavvy]

The way you have been treated makes me absolutely furious and also mirrors my own experience of many years battling with GP's. So much unnecessary suffering for want of good advice on PA, thyroid and vitamins. I have been following the recommendations on this forum for a year or more now and it has changed my life. Like you, I was on my knees. Do get your ferritin etc sorted with correct supplementation as advised here - it will make worlds of difference, especially to the lack of energy and brain fog. And don't take any more nonsense from the GP Practice. Unfortunately it seems we all have to fight/be our own advocates at the very moment we feel most vulnerable and I wish you luck with finding your strength for that battle. Also I send a big virtual hug. You are no longer on your own with this. Use the collective might of the incredible people on this forum. Good luck!

[TheSnufkin in reply to SilverSavvy]

Thankyou so much, you've made me cry with your kind words and support. It's so lonely being in this situation with a brain that doesn't work trying to navigate the broken NHS and medical people who really don't seem to care

[SilverSavvy in reply to TheSnufkin]

I don't know whether they don't care or are afraid of a really complex condition and don't get enough training to feel/be skilled. Same effect on Joe Public: lives significantly diminished. Stay strong, keep fighting. You'll get there.

[waveylines in reply to TheSnufkin]

People on here do care though.... Many of us have been through what you are going through or various versions of it. Am sending you hugs too. Your not alone. Follow the advice on here and you will turn the boat around. The NHS has crashed tbh.... it's failing many now and knows it.My surgeon told me before my op that the NHS isn't safe! Scared me but he is brilliant so went for it. Aftercare was appalling so got myself home ASAP with a loving caring son who has supported my recovery. Am so thankful.

There are some great people on here who know loads and can help to advise you. Take heart. Big hugs Xx

[TheSnufkin in reply to waveylines]

Thankyou so much. It's so frightening that our support system no longer supports us. xx

[FoggyThinker]

Dr Peatfield's book on thyroid problems has a whole chapter on CFS/fybro - IIRC he felt they were caused by being hypothyroid... I got the same suggestion from mine (only after I rejected the default of depression though!). So sorry you're being given the runaround by your GP, like others it makes me so cross and sad that we have to try to figure this out for ourselves (I haven't, yet, but getting there I hope!).

Very best wishes for feeling better soon, this forum will be a godsend for you I'm sure

[TheSnufkin in reply to FoggyThinker]

Thankyou for the book suggestion and also for the support, it's so appreciated

[waveylines in reply to TheSnufkin]

It's a good book Snufkin. Worth getting. Read it in small bits.... Called Living with your Thyroid by Barry Durrant Peatfield. You maybe able to pick up a secondhand one.... Save them pennies!

[DelicateInput]

I think I can safely say your B12 is far too low, right at the bottom of the range. Mine was around 220 for years on a range of 200 to 900. Whilst thyroid medication made a big difference, the addition of B12 also made a marked difference. Just buy some over the counter and see. Ideally, it needs to be 600. Mine went up to 465 and then I doubled the dose which brought a further improvement. 25 mcg levo is almost a joke or a children's dose.

I think the GP should do a thyroid scan but the NHS is always penny pinching. I did get mine on the NHS but had to see an endocrinologist privately. The GP thought the goitre swelling might be cancer which is why he did it on the NHS.

[TheSnufkin in reply to DelicateInput]

Thanks for this information. It blows my mind that GPs think that as long as you are 1 point over the bottom of the range limit that you're fine. 🤬

[DelicateInput in reply to TheSnufkin]

Unless you have cancer or a serious heart condition, I don't think the NHS is bothered about anything. Doctors are dictated to by NICE but their guidelines are wrong and different from that of all other countries, and they even have the gaul to state that only those with a TSH of 10+ should be offered levo, on cost grounds. I know people who have had thyroid problems from childhood and they are the only ones who get treated, and they can't understand why I have such a struggle. I suspect I had it from around age 25 though. I did find the B12 helped me cognitively and memorywise but you need to get it in the upper part of the range. In Japan, normal is 600 minimum.

[dunestar]

As well as B12 you also need to look at folate levels. Earlier this year my folate level was within range but on the low side and I was experiencing your symptoms but not in such a severe form. I'm taking 400mcg of methyl folate and I'm slowly improving.

[TheSnufkin in reply to dunestar]

Thanks. I already take so much medication for other stuff (allergies, mould sensitivity, asthma, depression, nerve pain) that I'm going to need a new, enormous daily pill dispenser. It's hard enough finding a time to take my levothyroxine. I now have to take it at 5am when the dog wakes me up for a wee so that I have at least 3 hours before I take the next tranche of pills 😭

[Brightness14 in reply to TheSnufkin]

Just about right on time I take mine when my dg wakes also.

[Brightness14]

Your dose of Levo is very low and so are your results, maybe an increase would help. Did you have your FT3 tested that is the important one.

[TheSnufkin in reply to Brightness14]

Nope,they won't do a T3 test....

[Brightness14 in reply to TheSnufkin]

could you have a private one then this would help you see where you are.

[HowNowWhatNow]

You have lots and lots of info here. I only just want to ask - and apologies if someone else already has - any reason why your ferritin might be dropping like this?

If it continues - and once you start supplementing, it’s harder to see - you could ask GP for a stool test (FIT / calprotectin) just to make sure no serious underlying GI issues causing it. And if heavy periods, make sure you go for smear / think about why suddenly heavier.

[TheSnufkin in reply to HowNowWhatNow]

I honestly don't know why my ferritin would be dropping, I don't know enough about the processes it's used in by the body. I'm menopausal so don't have periods any more so it's not to do with heavy bleeding. I had a GI infection on holiday two weeks before the test was taken, don't know if that's the issue?

[HowNowWhatNow in reply to TheSnufkin]

I don’t know if the body is depleted of iron by GI infections. Sounds possible it would be needed / used up by the immune system.

Be careful with how you go about supplementing the iron. It’s not as cost-free a decision - to take supplemental iron - as it looks, if your GI system doesn’t agree with the type you are taking.

I think sometimes when there is inflammation in the body, it can (others - can you confirm?) make ferritin levels look higher than they actually are. So I don’t have a short answer to your question.

[waveylines]

Yes I was the same too but once on an optimal dose of thyroid medication.... For me that was NDT & the other two probs addressed the needs for so many medications disappeared. Hang in there...

[Vasiliki99]

I have both there in reality it probably is a lot of thyroid which is not treated by even high doses of T4 not working. T3 I took for a while a bit better but not a lot. CFS got diagnosed it's true that the label fits I am chronically caput I'm just like not here I'm so tired and run down I can't even do much bit I'm better afternoon than morning. It's v sorry situation. The thing is my adrenals are shit so that's more the CFS but it mite originated in the thyroid as I have hashimoto thyroiditis and then I have had so many infections that the infections are causing the CFS as it messes the system , glandular fever, noravirus, salmonella etc r all triggers of CFSME. Best of luck it's a slow process. If it's more comfortable to wear the CFSME badge than wear it to stop yourself from overdoing it .....and get help with work