GP would NOT refer to Consultant/Specialist. Suggested Depression or Chronic Fatigue Syndrome!! Says all results are normal. What do I do?

[PoppyRose]

I have asked again for more detailed results (not provided previously) but it's very lengthy and not sure if you can 'attach' them on here.

I'm afraid I've just returned from my GP after requesting a referral to a consultant and she wouldn't. !!

In my surgery you book into whoever is free - today was a visiting GP.

She insisted that all my results were normal, and to 'pacify' me agreed to VitD, Cacium, B12 (I think) Ferrous and a couple of other tests.

She suggested Depression or Chronic Fatigue Syndrome., but then when I pushed in disagreement she agreed that they didn't account for my physical symptoms. ?? She asked if I had researched my condition and presumed 'on the internet' only and said a lot of what you read on the internet is rubbish apart from patient.co.uk/ - which I will now compare.

I explained I got the Dr. Toft book as recommended by the nurse there and this is where my concerns started after still not feeling well.

She asked if I have stress in my life. !*"?!*+! (really bad swear word) and perhaps need to look at coping better. This will make me tired and lethargic.. yes it would ... but I have other symptoms that diagnosed the HypoT.

She then assessed me on the computer for Depression (I agreed, to prove my point and have it recorded) and the score came out low. Stupid programme, unreliable, not valid in any way as it only asked how you felt in the past 2 weeks!! and gave ridiculous choices of " every day, never, several days & more than half the time" work that one out for professional assessment!!

So for example " have you thought you might be better off dead or wanted to harm yourself"? (in the last 2 weeks remember!!)

If your TSH is within range then the labs DO NOT test for anything else. i.e. T4 etc. I suggested that the TSH can not be interpreted isolated and she agreed but it IS if everything else was 'normal.' The labs won't investigate further. It's not a GP decision.

I have now noticed that in March 2011 near diagnosis time my TSH was 5.3 (0.3-5.00) and Serum free T4 level was 10!! (10.4 - 24.5), I was put on 75mcg but then 50mcg. My TSH was last recorded at 3.7 this year.

I now have a copy of those March 2011 results that show in summary all is normal;

Scan of Thyroid - not malignant (I have nodules)

blood pressure 60/100

thyroid peroxidase antibody level 720 units

immunology - await results

serum lipids - normal (detailed breakdown provided

TSH 5.3

Free T4 10

Plasma glucose - normal

GFR MDRD - normal greater than 90

Serum LH level - normal 3.8

Serum FSH - normal 3.9

Bone profile - normal (details breakdown provided)

Liver function - normal (detailed breakdown provided)

Renal profile - normal

Serum Urea level 5.6 (2.5 - 7.5)

Serum creatinine 60 (46.92)

Erythrocyte sedimentation rate - normal 14 (3-15)

Full blood count - normal (detailed breakdown provided)

My last test results simply read TSH 3.7 - normal.

So sine then my TSH has dropped to 3.7 and therefore does not need further investigation or medication review.

If I am barking up the wrong tree (NOT as in barking mad ;)) please someone tell me; but I have now read so much just started on Paul Robinson's and I thought so much more could be done if you are within range yet with symptoms.

If it's proved I need antidepressants I'll throw in the gauntlet and take them or whatever you do for CFSyndrome - it's just that I don't know and she didn't help much.

I wasn't acknowledge as I left the room, but thanked her anyway.

*

What on earth do I do now?? Obviously do the tests mentioned above. Any suggestions much appreciated.

PR

Edited by admin to replace link with correct working one

[PoppyRose]

P.s.

Just had text from hubby on flight home saying " at least you'll get loads of drugs"

To which my response was "Maybe that's the answer. Don't solve the problem or cause just fake it on drugs. What a sh**** life I have then"

Oh dear...........feeling really rubbish now!

[PinkNinja]

Hi.

Are you still on thyroxine? If so, 3.7 is too high. The range is only really useful for diagostic purposes (and even then it's not that useful on its own!) I would go back and see a different GP with Dr Toft's book and highlight where he says TSH should be below 1. I can't find the paper at the moment but in November there was research that showed that TSH doesn't respond to thyroid hormones as taken as tablets in the same way as it responds to the thyroid hormones our own thyroids produce. This implies that TSH is not very useful for finding the correct dosage.

If your TSH is this high and you are taking thyroxine, then you need a higher dose and you should continue to fight. Perhaps a different GP would be happy to an increase or a referral.

I hope that helps a little

Carolyn x

[PoppyRose in reply to PinkNinja]

Hi Carolyn, yes your comments do help, thanks for taking the time.

Yes I am on 50mcg (reduced from 75 on initial diagnosis). This was not agreed on symptoms but on lab results. GP insists the labs range are correct and I am within it now. (this contradicts with most of my research and yes Dr. Toft - the book they recommended). It was when I pointed out that it is common knowledge for some people to still feel unwell whilst the results read normal, that she suggested Depression and CFS as alternatives. I asked her not to label me with 'another' condition before exhausting all opportunities with HypoT.

Unfortunately I have seen 3 different GP & Consl.Nurse there and they are all of same opinion.

Yes I have also read somewhere recently (whilst gathering ammunition) about your point on Thyroxine synthetic -v- natural. She put me down though for researching off the internet before even asking me.

Since calming down, maybe I will see someone private who doesn't need a GP referral. I have spent the last week getting private insurance authorised and signed consent forms for medical records, hoping to see someone in Manchester and so feel deflated.

Regards,

PR

[Hidden in reply to PoppyRose]

Hi PoppyRose.

This sounds so much like where I was earlier this year and I wanted to offer some words of encouragement. Your doctor is uninformed and wrong about your meds. It's possible to find a GP who will give you enough levo to keep your TSH under 1, but they're hard to find and I had to go to various GPs in the surgery until I found mine (which wasn't a big problems as it's so difficult to get an appointment with the one you want anyway!).

After using this site to ask for a recommendation, I found a consultant and finally someone is committed to keeping my TSH under 1 and getting my vit D up to 100. (Ironically, the GP I was seeing at the time didn't want to refer me but eventually I convinced her to give me a trial of levo and then she insisted on referring me because she didn't think I needed meds, so her incompetence really helped me in the end.) The consultant is also taking seriously my dentist's referral for possible Sjogren's Syndrome and wants to be kept informed of test results.

You are not being adequately treated and that's why you feel ill. Try not to take the doctor's nonsense personally and just keep trying to find someone who is either better informed or more flexible or both.

I wish you the best for the future.

[PoppyRose in reply to Hidden]

Hello Holly Ann

Thank you for your words of encouragement, they do mean a lot and will re read, especially the last para to instill me with the confidence i need now.

sorry using a borrowed computer and on borrowed time - with all the letters rubbed off! Mine crashed last night!!

I will read through these replies and suggetions again and makes notes of what the concerns are before my nexy appointment.

PR xx

[Hidden]

Hi Poppyrose, just a heads up - I tried to click on the link you've put in your blog and my computer thinks there's a trojan there... Might be my computer having a funny moment but perhaps you could delete the link and redo it in case others try to click too and it gets through their virus software? xx

[PinkNinja in reply to Hidden]

I have replaced the link so it should now work

[PoppyRose in reply to PinkNinja]

Thank you!!

[Hidden in reply to PinkNinja]

Cheers

[PoppyRose in reply to Hidden]

Oh no! Sorry about that. Thanks for flagging it up!!

(just tried it and it worked - very confused ?? then... read the comment from Admin below - derrr)

[PoppyRose in reply to Hidden]

my computer 'coincindently' crashed last night - hope it's nothign to do with the link. using a borrowed computer with worn out letters.

[Hidden in reply to PoppyRose]

ooh dear... hope it's ok! Do you have good virus protection? If it's a Dell then I can recommend calling their help line up. If you're out of warranty you have to pay but they track down any viruses and remove them for you. My old laptop was never the same after it had a run in with some viruses after I insisted I would be ok without virus protection... lol xx

[PoppyRose in reply to Hidden]

Not sure what happened there - thanks for the suggestion. Ran Norton again and it's seem OK. Fingers crossed!

[PinkNinja]

Hi.

Have a look at this blog that Rod posted a while ago about how TSH is not necessarily the best way to test thyroid function

thyroiduk.healthunlocked.co...

Carolyn x

[PoppyRose in reply to PinkNinja]

Ok just read it, all very relevant so why do they poo poo it? (no don't need to answer that)

Thanks.

...and If I find anything to back up my theory on the 'Patient' site as recommended by today's GP - I will be printing it off and straight back there!

[PinkNinja]

I have edited the link to patient.co.uk so it should now work

Carolyn x

[Framboise]

Wow, all those years at university and the GP uses an online diagnostic programme!

Is there any GP at that surgery who's helped you? If so why can't you book an appointment with that one for some time in the near future? I thought surgeries had to offer you appointments with a doctor of your choice if it wasn't an appointment for the actual day. Your TSH is still too high but some GPs don't understand that and go only by whether it's in the range. Perhaps the blood tests this GP ordered will show something too and will be a reason to go back to a better GP there.

[PinkNinja in reply to Framboise]

What really gets me in this case is the fact that after doing the on-line test, she dismisses it as rubbish because it didn't give the answer she wanted! That's no doctor, that's someone either after an easy life or trying to get extra dosh for the practice. We all knows depression pays way better than hypothyroidism!

Gosh, I am a cynical little madam today!

[PoppyRose in reply to PinkNinja]

Ha ha no you're talking sense and what we all think - no doubt! .. and yes she didn't get the ans she wanted - I hope she still posted the results on my records!!

I wonder how much a 'visiting' GP makes? .. and why? doesn't anyone else want/need them? Not sure how all that works.

[Framboise in reply to PinkNinja]

Easy life probably, and I wonder if visiting GPs are the ones who can't get a permanent job.

[PoppyRose in reply to Framboise]

Hello Framboise,

Firstly - Online diagnostic can you believe it? Very scary - I could have easily wangled it to a score of zero - or even 50!! how dumb was she?? I felt very patronised and a bit like a performing monkey.

Secondly - over a 18 month period timeline of visits.

1st visit - Female GP - with my list of symptoms of 6 months ran blood tests. carried out diagnosis.

2nd visit - Consultant Nurse - as I couldn't get in to see GP and they can prescribe etc...) she dropped the dose from 75mcg to 50mcg, (also see my profile for her advice!)

3rd visit - Consultant Nurse review and said there wasn't a massive difference. (same advice given as in profile)

4th visit - Male GP - after unrelated surgery told him I still felt rubbush - he suggested Iron tabs as I was low after all. Now been on these for 1 month, and taking VitD3 by self to try to feel better before return to work after 3 months.

5th visit - today - visiting GP.

Total of 4 different GP's all saying same thing. They are sticking to the lab results. I'm not sure how you work out who is the better GP, I think there is only one I haven't seen for this condition. I doubt one would let down the practice now, based on what the others are claiming.

Yes let's see if there is anything in the next set of tests... but I do not have faith. thank you for your suggestions.

PR x

[Framboise in reply to PoppyRose]

I know that nurses can prescribe some medicines but I'm surprised they can change a prescription for something like a thyroid condition. In effect your GPs are now prescribing according to a nurse's interpretation of blood test results, and not even FT4 or FT3.

The problem with going the private route here is that you may have your meds upped but your GPs may still not agree to prescribe the higher dose. Mine won't prescribe for me at all but they arrange the blood tests, but then my results were very different from yours in the first place.

As your TPO is high I think you could ask for a referral on that basis. I'm guessing they haven't bothered to re-check that recently, so don't consider it important or haven't understood its relevance. But which of the GPs to go to is a problem!

[Framboise in reply to Framboise]

Also meant to say, talking about CFS in someone with hypothyroidism is ridiculous, a favourite doctor of mine has a saying - When you hear hoof beats in Kentucky, don't look for Zebras.

[PoppyRose in reply to Framboise]

Hello Framboise.

I'm back!

Yes - 1st paragraph I agree with what you state. Barmy.

SO if TPO should be say less than 60 (although they don't state what normal would be) and mine is 720 what effect might that have?

[PoppyRose in reply to Framboise]

...Also Framboise,

You can only ring up on the day for an appointment at 8am, so if you're working or they have all gone by 9am you're kna...ed, so If it's my day off I'll take whoever is on duty. Hence the ridiculous timeline posted below.

[Framboise in reply to PoppyRose]

This is crazy! I can ring at 8am for an appointment that day but I can also book an online appointment with any GP I want at the surgery for any time up to a month in advance, although the two GPs I like are usually booked for at least three weeks ahead.

[PoppyRose]

Hope this works!!

Here are 2 links to the documents - as you may see it seeems to read 'normal' throughout.

dropbox.com/s/mklint295e92m...

dropbox.com/s/c31mg817cpci7...

PR xx

[Hidden in reply to PoppyRose]

Yep it works! yay!

The TPO antibodies are supposed to be below 60 in my lab - so yours (720) indicate an autoimmune Thyroid disease. They can't argue with that. (or can they?)

Although not an accurate test - when the TSH is well below 1 most folks feel better.

Vit D, B12 irons - folate/ferratin all important.

Depression gets more points than Thyroid funding - I'm cynical too, and supposedly have CFS after a Thyroid op, co-incidence? maybe I've learnt a bit over 2 and a half years, maybe I haven't!

I'll see any GP that day if I feel bad too. Keep on fighting! Jane x

[helvella in reply to Hidden]

Definitely need to look at B12. And iron and ferritin.

Your RDW is low-ish, and HB low-ish. And yet your MCV is average.

My guess-interpretation is that less-than-optimal iron is making your red blood cells small - and less-than-optimal B12 is making your red blood cells large. Net effect - they are pretty average - the two things more or less cancelling each other out.

[PoppyRose in reply to helvella]

Hello,

The ones you suggest to look at are the tests that I will have done next week. I'll see what they reveal. Failing that... ?

So I will presume then that the cancelling out of each other is acceptable.

Many thanks,

PR

[helvella in reply to PoppyRose]

Absolutely NOT acceptable. It leaves your red blood cells a nice "average" size - but (if I am right) you are suffering the effect of iron deficiency anaemia AND low B12.

This is a classic combination which gets missed because of the mean cell (a.k.a. corpuscular) volume not being seen to be too high. Thus no suspicion of B12 deficiency. Thus no treatment. Thus possible permanent, irreversible nerve damage before it is recognised. And suffering the other impacts of low B12 such as breathlessness and tiredness.

And the symptoms of low iron and (possibly) decreasing ferritin. Such as tiredness.

[PoppyRose in reply to helvella]

Oh right.

That's right, I am low in iron and on Ferrous Fumarate 210 mg once daily (because I insisted I was still considerably tired only 4 weeks ago). Don't know anything about having a low B12 , this might be of the tests due - sorry if I sound ignorant about it all. It is very interesting though.

So what nerve damage might it cause?

[helvella in reply to PoppyRose]

I quote:

If you have low vitamin B12 levels for a long time, you can have nerve damage. Symptoms of nerve damage include:

Confusion or change in mental status (dementia) in severe cases

Depression

Loss of balance

Numbness and tingling of hands and feet

ncbi.nlm.nih.gov/pubmedheal...

Or have a look at:

pernicious-anaemia-society....

(They require you sign up to see everything.)

And:

ods.od.nih.gov/factsheets/V...

There are several reasons hypothyroid people, and especially those with autoimmune forms, suffer low B12.

Rod

[PoppyRose in reply to helvella]

Tahnks Rod,

I will read the links whn on a better omputer. I have borrowed one as mine crashed last night and all the blooming key are subbed off and my touch typing is not as good as it was!

I will get back to you when I can make sense. Sorry lol!

[PoppyRose in reply to Hidden]

Hello Spareribs,

Yes brilliant!! Thanks again Admin.

Oooo you got me on the TPO ?? I can't see what that is.

I'm so tempted to research CFS now but will get 'told off' by the GP LOL! I know nothing about it.

I have also checked out 'the site' recommended by the GP and it has little if any advice, with a poor forum - so will stick to this one - no wonder she recommended it. Just to be devilish I have posted a reasonable question and will await 'respectable' answers. Hmmmm... possibly present them to the GP.

It all boils down to the 'ranges' how do we achieve changes like in America? Or is that a question for Dr. Toft? (no answer needed)

PR xx

[helvella in reply to PoppyRose]

I have actually been around thyroid long enough now to have seen a widespread and substantial reduction in the top end of the TSH reference range - first in the USA then over here (and elsewhere).

[Hidden in reply to PoppyRose]

sorry I'm a bit fuzzy headed tonight & auto typing abbreviations such as TPO Thyroid peroxidase antibody - yours says refer?, but no ranges so I'm just guessing by what my lab here says (less than<60) I hope it's similar.

Yes Admin, but not treated I'm afraid, so subject to errors!

My opinion of a 'suggestion' of CFS after half my thyroid out is different, but have a friend diagnosed, she's gone from pillar to post with no results or actual help (except VitD) - actually a few folks 'diagnosed' therefore I'm v sceptical - some folks say it's a 'bucket diagnosis' when GPs don't know (i.e. no treatment) but I'm not detracting from the plight of those who have such problems. J x

[PoppyRose in reply to Hidden]

yes,

TPO is 720 units, doesn;t show ranges - I have no idea what that means or does.

bucket diagnosis - that's how it feels

I'm struggling with this borrowed laptop mine crashed last noight. sorry if not making sense.

I will go through all comments and make a list of what I think they should be picking ip in my next appointment.

Thank you,

PR x

[helvella in reply to PoppyRose]

Although TPOab varies, it is typically something like 50, 60 or 70 - and anything higher is positive. That is, at 720 you have enough Thyroid Peroxidase antibodies that there is something up. (Lots of people have low levels, maybe transiently slightly higher, hence there is a threshold.)

Most often that would be interpreted as "this person has autoimmune thyroid disease".

[PoppyRose in reply to helvella]

Great! I've got it now. Well not really, but at least something in print confirms my ATD. I'll highlight it on my report.

Regards.

[helvella in reply to PoppyRose]

And don't get hung upon the word Hashimoto's.

Doctors used to distinguish between those who have goitres and those who do not. If you do have a goitre it is Hashimoto's; no goitre, not Hashimoto's. But realisation that the actual lymphocytes attacking the thyroid are the same regardless of goitre means many doctors are happy to use the term for either. And some doctors never use the term. And some stick with the old distinction.

[PoppyRose in reply to helvella]

Thanks for explaining that one Helvella. I've seen it mention so many times on here and thought they were separate conditions. It's all so complicated!

I don't think they will label me with that one unless it's has a cheaper costing than Depression or CFS (as that's what they are opting for now).

By the way - got my computer back and ready to go through all the blips you good people have flagged up as worth looking at. Any typos from now on are purely down to haste and laziness!

[helvella in reply to PoppyRose]

Hypothyroidism is a state of having low thyroid hormone levels.

Hashimoto's is an autoimmune disease which ultimately destroys the thyroid.

Hashimoto's usually (eventually) causes hypothyroidism. But in early days no change or even slight hyperthyroidism is possible.

[PoppyRose in reply to helvella]

Ha ha oh dear.. here we go... are you ready? I will pick your brain on a p.m. if that's OK? The posting spaces are getting smaller and I'm so interested!