Where to go now following GP GUESS WORK of M.E.

[Femme1]

Following my ridiculous meeting with quack GP today, and being told my TSH OF 2.59 AND BOTTOM OF RANGE t3 and t4 definitely did not represent thyroidism, and it was more likely I had M.E (good call lol) I am a little unsure as to what my next port of call is. He has ordered a lot of new blood test (after I discussed going private due to my REAL health concerns) I will obviously await these results, but if they are negative , what then? I will of course ask him to refer me to a thyroid specialist endo, but is that likely to happen when he insists my thyroid it tippety bloody top? Are there any good endocrinologists out there who do not require a doctors referral?

I am now being tested for :-

bone profile

complement c3 and c4

C Reactive protein

ESR

FBC

GFR

HAEMOLYSIS

IMMUNOGLOBULIN AND SERUM

ELECTROPHORESIS

Immunology carrier test

Liver function test

Thyroid function test TSH

UREA AND ELECTROLYTES

VITAMIN d

NB if my thyroid is the picture of health why is he running the crappy TSH test again anyway seeing as my last test from lab was only a week ago????

*BANGS ONE'S HEAD REPEATEDLY AGAINST THE NEAREST WALL* Doh!

[rosetrees]

After I was first diagnosed with hypo thyroid last October, but before I shouted at my GP to get T4, I started taking nutri adrenal and nutri thyroid. They are (or claim to be) hormone free and are sold as health supplements. I noticed a difference even on one tablet of each.

I'm not sure if it's ok to post the link here, I'm hoping so as it isn't precription med but a health supplement

nutri-supplements.co.uk/pro...

Where do you live? I ask because I'm off to see Dr P next week. His main clinic is, I think, in the Croydon/Cheam area of South London, but I know he does occasional clinics in other places. I'm seeing him in Malvern. Maybe paying to see him could be an option?

[Clarebear in reply to rosetrees]

Yes it's fine to post the link as they are both "supplements" xx

[Femme1 in reply to rosetrees]

Hi Rosetrees, thanks for this, will certainly look into the nutrisuppliments! Whilst I am amidst tests, will these suppliments affect my results? Is it ok to just get started do you think?

Ilive in north Lincolnshire, about half an hour from Hull and an hour from Sheffield, prepared to travel further, but london is a fair step for me

[rosetrees in reply to Femme1]

Hi Femme. This is the list of his clinics for 2013. He doesn't appear to have a website of his own.

CRAWLEY, Sussex

Monday to Thursday except when away

3,4,10,11,12,17,18,19,20 December

.

Telephone: [phone]

ICKORNSHAW - between Keighley and skipton - North Yorkshire

4 5 6 February 2013

22 23 24 July 2013

18 19 20 November 2013

Telephone: [phone]

[e-mail]

MALVERN, West Midlands

18th - 20th April,

19th - 21st September

Telephone: [phone]

STOCKPORT

6,7,8,9 December 2012

17th - 20th January,

7th - 10th March,

30th May - 2nd June,

15th - 18th August,

17th - 20th October,

5th - 8th December

Tel: [phone]

[Femme1 in reply to rosetrees]

Thanks for this rosetrees, it's really helpful, am doing thyroid doc research as we speak x

[ChemicalAngel]

I had to have all those bloods done for the ME/CFS clinic as they want tests that are no more than 6 MONTHS old!!

Have been seen by the triage team for ME/CFS, and they insist this is what I have, despite my T3 and T4 being at the bottom of the range, and a TSH of 3.99!! They refused to accept my TSH level as hypothyroid!!! My ferritin level is just 8, and my vit D is 47, and the endo put me on VitD supplements (that have more calcium in than Vit D!) that are giving me shocking headaches

I do not feel that I have ME/CFS in any way shape or form!!

Just waiting for the appt to be seen by the occupational therapists to give me advise on how to manage my energy etc etc.

I feel I am blocking an appt for someone that really needs it. They insisted again it is what I am suffering from, and that I was in denial.

Hope you get seen soon, and dont wait the 4 months that I did to be seen by the triage team!! Could be JULY! before I actually get appt to be seen my OT!

Good luck

Ann xx

[Femme1 in reply to ChemicalAngel]

Oh for crying out loud, this beggars belief, you must be so exasperated and upset with this fiasco. Have you seen a private specialist? I was kind of pinning my hopes on this as a last course of action if all else fails Stories like yours leave me so angry and left with even less hope Your TSH is higher than my last result and I am feeling cheated after leaving the surgery today. We can't let this ridiculous situation be allowed to carry on, its disguisting.

[ChemicalAngel in reply to Femme1]

Hi Femme1. I am saving hard to get the funds to see one private.

It is beyond a joke how so many are treated so badly, when the docs go off an outdated test.

Ann xx

[rosetrees in reply to ChemicalAngel]

the ME/CFS team don't want you to be treatable. It puts them out of a job. After 37 years I was referred to our local ME consultant a year ago. (Yes, you did read that correctly). He asked me few questions and didn't even examine me. He wrote a letter to my doctor which was unsigned, saying I had ME. As I said to my GP "he doesn't know that, he didn't ask enough questions to make a diagnosis."

ME is fashionable and the Health Service "needs" it to exist.

[Femme1 in reply to rosetrees]

Its a bloody joke isn't it, so let me get this right, when presented with bloods that highlight a thyroid problem (even if they are borderline) followed up with patient testimony to endless symptoms, they choose not to treat, however, they will choose a 'non testable' diagnosis of M.E. without further investigation??? Shocking!

[rosetrees in reply to Femme1]

"testimony to endless symptoms" presumes you have a doctor who will allow you to tell him your symptoms. I've never had one. I actually said to my GP last year that no-one knows what my symptoms are as no-one has ever let me tell them. He didn't disagree. I then said that every symptom I've ever mentioned has been systematically dismissed. His (rather perceptive) reply was "or seized on. I do admit we have a tendency to do that."

He didn't, though, ask me to tell him what my symptoms are. I have always believed that if I could find a doctor who would listen to my symptoms and work with me we could find the cause. No such doctor exists. Finally I am managing to put the pieces together myself. The internet is a wonderful place, as is this forum.

[ChemicalAngel in reply to rosetrees]

Hi rosetrees, I did feel that he was getting a quota of patients for some form of what, possible financial grant? As it is new to the area I live in, and he is after funding, the more that are 'diagnosed' the better chance he has of funding.

Ann xx

[merissa in reply to ChemicalAngel]

sorry to chuckle Anne but I had the same shoddy treatment im in denial lol they take the p... x

[Mini1 in reply to ChemicalAngel]

Hi Ann. Your situation sounds the same as me! I have been referred to CFS clinic and had my phone appt with OT about pacing. It was a waste of time. I knew more than her. I then had to wait another month before a phone call from physio to see how I was getting on with pacing. I was then put on waiting lost for GET which is a 3 month wait. The wait for CBT is a year! I I did get CBT through my local health authority, but even the therapist doesn't think I fit the description of CFS! In the mean time I am still exhausted and still ill and no one is helping! I don't think I have CFS!

Does that sound familiar?

[Ansteynomad]

"Have been seen by the triage team for ME/CFS, and they insist this is what I have, despite my T3 and T4 being at the bottom of the range, and a TSH of 3.99!! They refused to accept my TSH level as hypothyroid!!! My ferritin level is just 8, and my vit D is 47, and the endo put me on VitD supplements (that have more calcium in than Vit D!) that are giving me shocking headaches."

OK, you sound as if you are in a similar situation to the one I had. My current thyroid results are in the same ball park as yours, but I am working full time, exercising and have a lively social life. What has made the difference to me is raising those Vitamin D and iron levels.

I take Nature's Best 5,000iu gelcaps of Vitamin D. I started on one a day and now take one every other day as a maintenance dose. My Vitamin D level is something like 130. If you do not have low calcium, you do not need a calcium supplement.

It has taken me four years to raise my ferritin levels to over 70 (and I know I still have a bit to go). I cannot take the standard iron supplements and even when I was right at the bottom of the range the NHS would not treat. I am taking Wholefood Iron by Cytoplan and find that this is raising my levels steadily without upsetting my stomach.

While you're doing that you will have more strength (mental and physical) to fight these people who cannot recognise a simple case of hypothyroidism!

AN

[Femme1 in reply to Ansteynomad]

This is endless isn't it, it's no wonder so many people give up when faced with this kind of rubbish. I agree with you re boosting health with natural suppliments to aid your body through this stupid wait for help that doesnt appear to be coming!

[ChemicalAngel in reply to Ansteynomad]

thank you, will look into getting the natures best and the iron supplements.

I too have a decent social life, it isnt stopping me from doing my job nor socialising.

Ann xx

[Soldieress]

Hi Femme 1,

It might be worth checking all thyroid antibodies too. If they're elevated the doctors might take you more seriously. as they will then know there's a problem. I found this website quite useful. your results might fit the results they show at the bottom of the page. patient.co.uk/doctor/thyroi...

Best of luck

[Femme1 in reply to Soldieress]

Thank you for the link soldieress , my antibody levels were both really low, so classed as normal, so not a lot of help in this situation. Should we actually have ANY thyroid antibodies in our blood though I wonder ?