Am I a hypochondriac or do I have an offensive and ignorant gp? If the latter, then how does this plan of action sound?

[Scissors]

Hello! First time poster so apologies if I'm being a bit of a thicko.

Symptoms: For literally all my life, childhood and all, I have had ridiculous sleeping patterns. Basically I sleep untill woken, so with drugged-up parents like mine that was sometimes a week after I went to bed. Conversely, I could also stay awake for days at a time. Absolutely no diurnal rhythm. Also since childhood I have had hot flashes, extreme salt cravings, and anxiety problems. Despite not eating for days on occasion, I wouldn't feel any hunger.

I'm 32 now and have lost plenty of jobs and relationships due to being asleep for days on end. Still no diurnal rhythm. In the past year my symptoms have multiplied and worsened, to the point of spending months in a wheelchair. I now have weight gain (+10inches at the waist, and I used to be a model!), days when I can't get out of bed no matter how frequently I'm woken up, hip and leg pain leading to total immobility, daily increasing confusion, memory and word loss, gasping for breath (sometimes even when I'm lying still in bed), daily hot flashes and dizziness (I actually quite enjoy the dizziness, it makes me giggle). I can still go for days without eating and without hunger, but my partner now cooks a dinner every day so recently I've not had to I have a pot of salt next to the bed, I dip into it maybe once a day.

Current state of play: In bed six days a week, if my painkillers do their job I shuffle out for a short walk in the evening (never could abide sunlight). Once a week I drink a can of 'rockstar', take extra painkillers and manage to walk round a shop for a bit, still with pain and breathlessness.Then back to bed.

My gp says this is all normal, and is half convincing me that while the pain is 'real to me' it isn't real in any clinical sense. All other symptoms are normal for people my age, he tells me. I'd be more convinced if he hadn't also told me that saliva cortisol tests didn't exist, haha. Still though, I'm open to suggestions on how many of my symptoms may be psychosomatic, especially considering the illegal substances my mother took while carrying me. My gp tells me that speed (her drug of choice) consumption during pregnancy would not have had any effect on the foetus.

I've been allowed to have some blood tests, but as the results are all normal I'm not to have any more, it seems

Serum Ferritin = 15 ug/L (no range given)

Serum free T4 level = 12.3pmol (no range given)

Serum TSH level = 2.19 mu/L (range 0.35 - 5.50)

Serum Total Protein = 71g/L

Serum Sodium = 139mmol/L

I have a load more to do with blood counts and platelets and so on, I don't know how relevant any of them are?

I thought the ferretin and ft4 looked a little low, but I'm new to all this and could do with suggestions.

My plan is to get some tests (FT3, RT3, TPO, TgAb, active B12, folate, iron, cholesterol, calcium, vit D, vit D3 and saliva cortisol... any others?) done via Blue Horizon, take the results to a private doctor (or endo?) And see what happens. Does this sound like a valid plan of attack to you? Would it at least be a start? Do you think I'd maybe be better off going to councellors instead? I've been sent to so many already and none can find anything wrong, but I imagine finding a good one is like finding a good gp, eh?

A few years ago I was running a nightclub in Mayfair, and now I daren't go downstairs in case I can't get back up again. ANY advice at all would be wonderful, please. Sorry for the over-long post x

[shaws Administrator]

This video is 1 hour and it is by an American Doctor who treats patients as people not according to blood tests. If you listen, it's about 1 hour. You just have to register with your email to listen free. It is only on for 24 hours.

healthunlocked.com/thyroidu...

[shaws Administrator]

I doubt if you are a hypochondriac. I think it is due to our doctors being untrained in treating people with fatigue, high cholesterol (particularly women) I think its about 6 women to 1 man who have thyroid gland problems and in the UK they are only diagnosed by the blood test, not by clinical symptoms as the above doctor does. We have to read and learn as much as possible in order to get well. Weight gain, fatigue etc are symptoms of hypo.

[Scissors in reply to shaws]

Hi Shaws. Yep, I thought many of my symptoms pointed to hypo, glad you think the same! I'm also wondering about adrenal... ...er... 'fatigue'? Doctors don't take that one seriously though, do they? Thanks for the vote of confidence in my non-hypochondriacness

[shaws Administrator in reply to Scissors]

This doctor says cortisol/adrenal testing is a waste of time as he says all we need are hormones. Even a low dose NDT if patient is complaining but he is rare. Our doctors don't don't know clinical symptoms and only go by TSH. You have to register with your email address and video is around an hour.

healthunlocked.com/thyroidu...

Video is only free viewing for 24 hours.

[Heloise]

Oh my goodness, scissors. If this is for real, of course you have something very wrong with you. As I look into other places starting with adrenal total fatigue, I think I have a website that gives good explanations for blood test results and where they should be in the range....not only calling anything in range normal. drkaslow.com/html/blood_cel...

[Scissors in reply to Heloise]

Ooo this is very interesting reading! According to the site you linked to, I'm either right at the edges of the healthy ranges, or else just outside of them. No ranges were provided with the test results I got, so this is very useful, thank you.

RBC = 4.54 (range 4.0 to 4.5)

Hgb estimation = 129g/L (range 13.5 to 14.5 g/dL)

HCT = 0.39 (range 0.39 to 0.45)

MCV = 86 (range 87 to 92)

MCH = 28.5 (range 28 to 32)

This is starting to paint a picture for me! Thanks again! x

[Heloise in reply to Scissors]

I think this will also interest you.

youtube.com/watch?v=nZ_CP7l...(Not working as expected?)

[Scissors in reply to Heloise]

You're right, it does!

[Heloise]

Aldosterone deficiency symptoms:

Aldosterone

Aldosterone belongs to the class of hormones called mineralocorticoids, also produced by the adrenal glands. Aldosterone helps maintain blood pressure and the balance of sodium and potassium in the blood. When aldosterone production falls too low, the body loses too much sodium and retains too much potassium.

The decrease of sodium in the blood can lead to a drop in both blood volume—the amount of fluid in the blood—and blood pressure. Too little sodium in the body also can cause a condition called hyponatremia. Symptoms of hyponatremia include feeling confused and fatigued and having muscle twitches and seizures.

Too much potassium in the body can lead to a condition called hyperkalemia. Hyperkalemia may have no symptoms; however, it can cause irregular heartbeat, nausea, and a slow, weak, or an irregular pulse.

[rosetrees]

The salt craving suggests possible adrenal problems. Of course the saliva cortisol test exists - I've had it done myself. Lack of diurnal rhythm could, possibly, indicate a neuro-transmitter imbalance. I had mine tested recently and the results were interesting - not that I understand them, but they came with a suggested treatment regime. I ordered the test from here purehealthshop.co.uk/shop/a...

You most certainly aren't a hypocondriac - your doctor is lazy and disinterested, which sadly is the norm.

Get into the habit of always asking for print-outs of all test results with ranges. You can improve, but it takes time and work to find the right tests, interpret the results and find the right treatment. If you're interested I can PM you details of two doctors who I have seen. Both run clinics in a variety of places and one offers telephone/skype consultations I believe.

[Scissors in reply to rosetrees]

Thanks, rosetrees! That ties in perfectly with Heloise's video, above. Do you know if NHS/private doctors will pay attention to the results given by purehealthshop.co.uk? I'm slightly concerned about paying to get blood/urine/saliva tests done and then finding that no doctors will acknowledge the results. Did your doctor use your results to help you or are you planning to use them for self-medication alone?

I find it interesting that taurine is on there - in the past I've taken taurine to help me get past particularly stressful incidents, and it really helped. Probably an unhealthy thing to do, but it worked for me

Yes, I would love if you could give me the details of anyone you have found to be helpful! Could you also let me know how you got along with them? There are so many doctors to choose from and I can only afford to go with one so I'm hoping to make the right decision based on personal reviews.

[lisabax in reply to Scissors]

Thyroid UK have a list of private doctors who are sympathetic to these kind of problems and do recognise the saliva test. Why not ask Louise Warvill for the list

[Scissors in reply to lisabax]

I already have it, thanks what we really need is a website where doctors are reviewed as frankly as those hotel review sites.

[lisabax in reply to Scissors]

I absolutely agree. TUK are not happy for docs to be named, but I'm going to do a review of the one I've been seeing soon, as I think it might be helpful to others, but I won't name him.

[rosetrees in reply to Scissors]

Hi Scissors. I've sent you a PM

[denvajade in reply to Scissors]

Hi scissors, I would be pretty sure that you mums drug habits have damaged your health, how ridiculous for a doctor to say otherwise, wishing u well

[Scissors in reply to denvajade]

I thought so too! But then when I'm in front of the gp he just smiles and shakes his head and I feel so stupid for having thought so...

[Hidden]

Most GPs should test B12 & folate, Cholesterol, Calcium and possibly Vit D, mine even tested TPO (when I asked) - have you asked for these tests or tried asking a different GP? Don't forget TSH is highest in the morning, a late test is often low even if you are Hypo - besides blood tests aren't the full picture without signs & symptoms (you have plenty).

Otherwise your plan sounds good, if you saw a private doc he would recommend tests - or shop around for tests e.g. Vitamin D is only £25 here (NHS lab) vitamindtest.org.uk/

supplementing vitamin D made a big difference to my joint/muscle pain - you will probably be deficient as you avoid the sun unless you are eating shed loads of sardines for example! I can't help but wonder if Mum was Hypo perhaps & possibly taking amphetamines just to keep going I suspect. Hugs Jane

[r0dg3r]

a\part from thyroid have you been tested for ME

[Hidden in reply to r0dg3r]

How ARE you tested for ME? may I ask if you have had conclusive tests?

I know a work colleague had a Buspirone test, I believe there is also a SPECT Scan. Jane

[puncturedbicycle]

The tone of your post says you know your gp is living in an alternate universe where constant pain and weakness is normal and fine and presumably feeling well is doubleplusungood.

I met someone at the first Richmond meeting who had also been in a wheelchair due to thyroid issues and seemed (to me at least) recovered. Buggles84 I think? He might have some ideas to share.