Hypothyroid, fat, no energy but I am not a sufferer of CFS!

[Iphoenix]

Earlier in the week I saw my GP (a lovely doctor in training only around for 4 months) and I had asked him how can I get a diagnosis of chronic fatigue syndrome as I have experienced this ever since 2010. He told me to ask a neurologist and strangely enough I had an appointment with one today because it appears that I may have temporal lobe epilepsy caused by a meningioma. I have tried to convince myself and him that this is probably due to hypothyroid brain fog but it seems as though I was not successful.

So I have to have a sleep ECG (I think that's what he said!) and he will base his decision and what shows up there.

Anyway to get to the point I asked the Neurologist how can I get a diagnosis for CFS and he told me that I can't as Hypothyroidism is not CFS. I can't imagine anything more like CFS than that! Can't get real help for thryoid problems but it automatically stops any chance of getting benefits.

It takes me back to last year when I applied for PIP's, with a brain tumour, hypothryoidism, COPD, total deafness in 1 ear and poor hearing in the other and I got 2 points for wearing a hearing aid!!! Don't you just love the way we are put to the bottom of every departments list?

Sorry I am feeling a bit sorry for myself at the risk of losing my driving license = losing my freedom, the very last bit of sanity left to me.

Wishing you all good health.

[Jazzw]

If it is "only" hypothyroidism, why is it not being treated appropriately - i.e., to the relief of symptoms? Think an earlier post of yours said you were now on levo and T3 - how much are you taking? Do you have recent blood test results to share?

While I understand why you want the diagnosis of CFS, if your doctors are convinced it's hypothyroidism then they should be giving you sufficient meds to compensate. It doesn't sound as though that's the case! And while we're at it, what are your ferritin, B12 and Vit D levels?

[Iphoenix in reply to Jazzw]

Hi Jazzw you are spot on about I am taking Levo and T3. That was 8 weeks ago and I started on T4 75 mcg and T3 20 mcg, however not really getting any progress this week I have just upped the T4 to 100 mcg and amazingly this week I feel so much brighter and even gained a little bit of energy today so hopefully it will make a difference as the days go by.

I am on 3200 Vit D given by the doctors but I bought a supplement with a higher dosage 1000 iu - am I doing right or wrong by that? B12 has never been tested but I am taking 5000 mcg of methylcobalamin, I have also been taking some methylferritin (probably not the right name for it!) as well.

I have never been offered B12 blood tests either but I know if I were to have one I would have to leave them out for about 4 months.

[humanbean]

Getting a diagnosis of CFS would be the last thing in the world I would want on my medical notes.

If you are diagnosed with CFS then every single physical symptom you have from then on will be blamed on the CFS and you will NOT be treated or investigated for it. It would be a disaster. The same comments would apply to a diagnosis of fibromyalgia.

[CarolineC57 in reply to humanbean]

Yes, this is just what I was going to say! I was given a diagnosis of CFS back in 1999 and then a diagnosis of fibromyalgia in the early 2000s. Ever since I've had terrible problems getting the doctors to take any of my symptoms seriously. It's always put down to being either due to fibro or CFS - and other odd symptoms which don't fit, such as loss of body hair, were simply brushed away by the doctor who said "I've never heard of anything like that!"

So, I definitely wouldn't push for a diagnosis of CFS - just try to get them to treat your hypothyroidism properly. A diagnosis of CFS will only add to the difficulty of getting doctors to help you.

[humanbean in reply to CarolineC57]

I had pretty much the same response to being diagnosed with depression. Once it was decided I was depressed then everything I complained about in connection with my physical health was dismissed as the whinging of an attention-seeking, hypochondriacal depressive who was a total waste of space.

I was diagnosed as depressed when I was 18. I'm now in my mid 50s. Once you get some diagnoses on your medical notes you are doomed for life. Depression, CFS and fibromyalgia are some. IBS is another. They are all, in my view, just dustbin diagnoses to shut people up.

[CarolineC57 in reply to humanbean]

Oh yes, I've got the IBS diagnosis too. I forgot about that one. So my chronic constipation (presumably due to hypothyroidism) receives the response "It's just your IBS".

I recently got one over on the GP though. For years she'd been saying my constant and worsening shoulder pain was "just my fibromyalgia". I eventually persuaded her to X-ray it. She was suddenly galvanised into action and ordered a scan too. It was calcific tendonitis! No wonder I was in agony when my tendons were virtually turning to bone!

Sorry, I'm going on a bit of a rant. It makes me so mad when people are given these "dustbin diagnoses" and the real problem is never investigated. I've had to do all the hypo stuff on my own thanks to this - no help from NHS doctors.

[humanbean in reply to CarolineC57]

Rant away! I can empathise totally!

I've been doing all the thyroid stuff alone as well. It rankles, I have to admit. But I gave up thinking that doctors had my best interests at heart decades ago. I just wish that DIY surgery was possible, then I would never have to see them again!

I hope the treatment you (eventually) got for your shoulder(s) was successful and you are now comfortable.

[Iphoenix in reply to humanbean]

I loved the comment on DIY surgery maybe we should think about taking that up when we have got the correct medication!

[Iphoenix in reply to CarolineC57]

Caroline that was horrendous, you didn't get one over her, you suffered because of her, thank God she did give you an xray after all that. I hope you are much better now.

[CarolineC57 in reply to Iphoenix]

Well, at least now she's started taking me seriously!

My shoulder's much better than it was, thanks (I had an ultrasound-guided steroid injection, and the promise of another when/if needed). It's still pretty painful and a bit restricted in movement but nothing like as bad as it was. The other one has it too though - only that one's not so bad yet. I suspect I may have it in my feet/ankles too (that's the problem which is described on my medical records as "unexplained pain and swelling" - I have yet to persuade the doc that this needs looking at too).

[Iphoenix in reply to humanbean]

I too was diagnosed with depression at 19 but I never took the pills and stayed away from the doctor who told me I needed them, however, at 50 I was thoroughly depressed and have been on and off ever since. The good news is that I am no longer depressed as I have worked out in the last couple of years with more dire symptoms of hypothyroidism it was that causing my frustration rather than depression.

The neurologist even said that I did not appear to have depression yesterday, being very kind he said my mood was excellent and I agree with him. The difference in my mood and mind was taking my power back, joining this forum and saying what I want. So thanks to you all for helping me attain this achievement.

[Iphoenix in reply to CarolineC57]

Thank you CarolineC57 for giving me the same advice as humanbean and I am sorry to hear that you are being ignored by your doctors. As for getting them to treat my hypothyroidism properly, I will try but will be amazed if I succeed!

[Iphoenix in reply to humanbean]

I am not at the same level of understanding the medical profession as you are humanbean! Thank you for letting me know the reality of their stupid ideas. I promise I will not take that concept any further.

[greeny1200 in reply to humanbean]

Can agree with you there human bean, I have fibromyalgia and have struggled for years trying to convince my dr that I need to see an endocrinologist. gp always implies new symptoms are fibro. Thankfully new gp has recently referred me to see one

[Iphoenix]

I don't know what happened there but I did reply to individual posts but it didn't happen, my apologies but if you read them you can work out which post refers to which person!

[humanbean in reply to Iphoenix]

It did work, and you didn't do anything wrong. It's just that display of posts on HU is not very good and it can be very difficult (or impossible) to work out which reply belongs to which post.

[Iphoenix in reply to humanbean]

Thanks humanbean

[cwill]

I to have the CFS diagnosis and a recent hint of more as well as hashis. I know that the post has moved on but please recommended to anyone with benefit issues that they find the money to sign up to Benefits and Work - they are the only reason I currently have any benefits.

benefitsandwork.co.uk/join-...

I found them in a moment of dire need and have never regretted the fee.

Iphoenix stick with it and push for the right treatment for you. I haven't got there yet but I am so much better than a year ago that I have real hope now. BTW anyone that is considering antidepressants, or is being pushed in that direction by ignorant doctors that really can't hear what we are saying (definitely harder for women I'm afraid) do try Kelly Brogan's A Mind of Your Own book. An eyeopener.

[Iphoenix in reply to cwill]

Hi Cwill,

Thanks for the information on benefits and work but I am very curious about what they actually do. Could you explain more please?

[cwill in reply to Iphoenix]

They are able to give info on the actual points system used by assessors, give guidance on completing the forms and key phrases that assessors are looking for etc. It is a low cost club I think that covers the costs of the advocates and website. We log on and can download all the benefit guides. They produce a newsletter once a month with benefit updates. We used the guides to make sure that I had the correct evidence and that we had correctly applied for the real points that my conditions warranted, not the minimum that the assessor might try to get away with. Eye opening. The latest newsletters have highlighted the fact that we should ask for our assessments to be recorded as this helps at appeal, but the DWP/Atos etc have responded with too few items of equipment in assessment centers to allow a recording such that they are now using cassette tapes - I am not making this up. They campaign to bring this sort of info to the public attention and have also used freedom of information requests re benefit sanctions and deaths whilst sanctioned. They regularly run money off annual subscriptions to help with the £. As I say without their guidance I might still be bed bound and very seriously ill but in the work related activity group of ESA .

[Iphoenix in reply to cwill]

Thank you so much for telling me all about this organisation it does appear to be invaluable when you are trying to get PIPs.

[cwill in reply to Iphoenix]

Glad to pass it on. I stumbled across them when in total desperation. None of us with a CFS diagnosis wants it but having the help of Dr Myhill ( I have had the mitochondria test) it at least feels as if someone is fighting our corner. And she has had no new accusations that lead to a fitness to practice hearing with the GMC - touch wood. If you don't already know it her CFS book is a good place to start re sorting out diet and supplements and most key advice is on the website.

[stoneym]

I had a private test for CFS, (it did cost somewhere between £250-£300 - but it is 3-4 years since I had it.) from Sarah Myhill's web site.) The test was done by Dr John McLaren Howard at Acumen, i think it is now called "Mitochondrial Dysfunction Test" and the result of this correlates exactly to someone's level of fatigue. Loads of info on her site. She says CFS is a symptom not a disease. The Test is used by lots of patients to get Benefit.

[Iphoenix in reply to stoneym]

Thanks stoneym I will take a look at it and see if I do have CFS.

[Angel_of_the_North]

Why do you want to have CFS? It is a "dustbin" diagnosis, meaning that no one has to try to make you well when you have that label, as it is incurable. You are hypo (which is classed as a disability in the UK and qualifies you for free prescriptions), and probably undermedicated if you still have symptoms. You might also have sleep apnea so sleep study isn't a bad thing.

[Iphoenix in reply to Angel_of_the_North]

Hi Angel of the North,

I don't want CFS just convinced I have it, but I shall be reading up on it to make sure.

Over the last few years I have been unable to do housework, walking just a short distance wears me out and renders me incapable for the rest of the day. Sadly I am presently incapable of working.

I don't want a dustbin diagnosis, I had no idea that the idea seems to be that you can't get help for anything else, but with hypothyroid it seems to me that right across the country very few can get help with what they desperately need.

Yes prescriptions are free because it is a condition that needs medication to live a normal life, but how many people on this site are leading a normal life?

I stated on my initial post (close to the top of the page) that I have 3 illnesses and yet another one being diagnosed on the horizon and yet the only points I got on PIPs were for wearing a hearing aid. Is there any justice in that?