Got more blood tests - can anyone advise?

[klicker]

Well I went back to the Doctor and explained that I wanted more than TSH results (e.g. T3, Vit D, B12, thyroid antibodies, and cortisol levels tested). He didnt want to do any of this.He said I had IBS. Because my memory is really so bad, I phoned my mum and got her to put the arguments that she has learned from this site to the Doctor. He clearly wasnt up to addressing the questions mum put to him (quoting Dr Toft as well as contributors to this site) and he agreed to do some more blood tests (although he thought I should be referred to Gastroenterology when mum was suggesting a referral to Endocrinology). Mum had given me a note to take to the nurse for the relevant tests (the nurse admitted some of them that I had asked for were not on the note provided by the Doctor but I think she did some of them anyway). Here are the additional tests and any information will be very welcome.

TSH (0.2-4.5 Mu/L) 2.1

Free T4 (9-21 pmol/L) 13

Free T3 (2.6-6.2 pmol/L) 4.7

Cortisol ( nmol/L) 403 (cutoff for 30min SST > 430 nmol/L ??)

CA125-Architect (0-35 KU/L) 7

250H VitD imm'assay results to follow

My previous results in an earlier blog showed GGT 46 (5-35U/L), C-Reactive protein 71 (0-5mg/L) and my salts were all below the lower ranges. It is amusing that the Doctor has said that my thyroid tests are normal and doesnt do anything based on laborotory tests but my Doctor also admits other results are out of the range - but still doesnt do anything!!!!

What is the point of testing I wonder?

Any more advise on this would really be grand. I am reading Dr Skinners book and it could be me he is writing about as he outlines typical symptoms.

The good news is, I think, because I forgot to write it down, I am maybe getting referred to an Endo as per a letter a put in to the Doctor requesting this (alongwith Thyroid UK's symptom form completed and TUK's reference ranges for TSH levels). The last Doctor I saw advised me only to go to her and she stated (I think) that I do not have IBS. This feels a little bit like progress.

Thank you in anticipation.

Klicker.

[Jackie]

Hi First of all the Ca125 which is only a marker for cancer, mine is 2,000, yours is very low in range. No worry there.It is primary used as a first guide for ovarian cancer but can be very high, due to lots of undesirable things in the abdomen.

Regarding an Endo, great, but it must be one you select, like with everything, good and bad. I never let my GP pick my consultansts lots of bad experiences like that. You can always ask for a rereferral but better to start off with some one good.High GGT , is liver but usually nothing to worry about unless other LFT`s ( liver function) shown to be out. it can however be associated with a diabetes. It is certainly worth and important to ask GP for Glucose and if possible, the better test, Hb1Ac. It is autoimmune and hormonal so common with all these diseases.,similar symptoms too. A good Endo should check that and other related things. If D low ( hormonal) then have a corrected calcium test before treatment, D can cause the corrected calcium to rise above range, that must never happen even it means stopping taking the D.

Your thyroid results are low but if not already on treatment, unless you find an Endo who will treat on symptoms, the best do, it is unlikely at the moment that you will get treatment. However, if on thyroid treatment different and you need higher doses,probably T4 ( levo) and t3 together.Cortisol would be considered Ok, you also need iiron/ferritin tests, only treated by GP below 10, very low. In that case as big range safe to take a little, sachets of Spatone, Amazon. It can make a huge difference.

If you see an Endo, make sure yo take a prompt list for your self, the best ones ( all consultants different specialities ) do treat on symptoms, not just bloods.

I hope that helps,

Jackie

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[klicker in reply to Jackie]

Hi Jackie, thank you again for your full response. This is much appreciated. No, it turns out the Doctor is not referring me to an Endo (being referred to an Opthalmologist for my "blown Pupil": Opth. is stumped by this and cannot explain why my pupil will not constrict when drops put in but says no connection to autoimmume issue) and Mental Health services for the rest!!!! I had high hopes for my mental health referal as the Doctor concerned's first act was to sent me back to my GP and requested a full medical (which the GP did reluctantly). Now the mental health Doctor has broken her leg and I wont see her!!!!!!Yesterday I specifically asked for a trial test of thyroxine and B12 but Doctor said this would be dangerous??????? and stressed again my bloods are normal!? Considering visiting Dr. Toft, Endocrinologist privately (his view seems to be that TSH should be lower than 1 and my last 2 have been 2 and 2.1 (so, high on the scale suggested by TUK chart). I'll need to read up on the new GMC guidelines and use it to get the treatment I think I need from the Doctor. It looks like a long haul to find good health.

[Jackie in reply to klicker]

Hi So many Gp`s are like that. I know Dr. Toft highly rated, is he an endo? if so you will need a GP referral , also the GP does not have to do tests or prescribe on his recommendation Can I suggest that you first have a TSH, T4 and FT3 done through Blue Horizon, main site ot TUK site. Quote TUK 10 for a £ 10 discount, finger prick or venous blood,£60 to £70, finger prick is the slightly dearer.. Well known Lab, well recognised by docs. So then, if the others show thyroid disease, any doc should treat you. This was so up to recently. always. In any case if considering seeing Dr. Toft you will need these.With the correct bloods and symptoms, both important, then you should be fine. It is hard with lots of doctors, in the end we often just have to be dogmatic. I would also phone the Psyche `s secretary. Often they are not off long but struggle.The secretary should have some idea. Why did the opthalmic surgeon not think of thyroid.? Mine is brilliant and knows so much about everything. The new guide lines for NICE, I gather do stipulate TSh over 10. Ridiculous, I have immeasurable TSH, but very low FT3 and low T4. Once I saw a good Endo, she is good, I have never had a problem with treatment and GP goes along like a lamb!. Have you tried phoning Dr. Toft`s secretary to ask about a referral. Trouble is thyroid disease can be expensive for the drugs , tests and then often may need scans etc, urine tests, 24 hour etc. All expesive. An Endo , private does ask the gP to do everything if patient wishes, just do not know if Dr. Toft is.

I do hope you find some one, do not give up, it took me 20 years to get treatment ( GP). , so fight, health vital to you.

Best wishes,

Jackie

[klicker in reply to Jackie]

Hi Jackie. Thanks for responding. Yes Dr. Toft is an Endo and used to be President of BritishThyroid Assoc., President of Royal College of Physicians Edinburgh and physician to the Queen when in Edinburgh. I think it's correct to say, although I am not absolutely sure, that he suggests an acceptable TSH is <1.0 and on his chart >2.0 is definately too high (diagram showing these levels for diagnosing on TUK site). He also says blood tests should not be interpreted in isolation but need careful assessment of symptoms and clinical examination.He has reprinted his book "Understanding Thyroid Disorders" (Family Doctor Books published in Association with BMA). The enquiry I made seems to suggest that the Doctor cannot refuse a referal because it is a private Doctor.

Re your other points. I did recently get my TSH,T4 and T3 results from bloods taken at the surgery through their labs. Do I need to have them taken again or can I use these results productively? How would I get the venous bloods taken for Blue Horizon? Is this also a service for taking bloods too? I'll check out what they do and if they are in Scotland.

I asked the Opthalmologist if my one enlarged pupil was autoimmune but he said no (he couldn't say what it was though).

I am reluctant to have to pay privately but I am aware other people have miserable health for years (actually I have had miserable health for many years too when I think about it). Its outrageous that I have had at least 4 MRI's and loads of other expensive exploratory examinations but at no time, have any of my doctors considered my hormones (my parents are both UAT, with other autoimmune disorders, and my only sibling has 2 autoimmune disorders!!!). My parents families are riddled with autoimmune conditions. Surely on the balance of probabilities I have a high liklihood of being autoimmune but they prefer to send me to the Mental Health services: a catch all for inadequate doctoring it seems. I'll keep on trying and hope that the Scottish petition to the Scottish Parliament yields productive enquiries into the efficacy of TSH diagnosing.

Klicker

[Jackie in reply to klicker]

Hi Yes I thought that he was. He wrote a lot of articles etc after the presidency saying he had been wrong about not treating more widely. I know one of the admin staff thinks he is wonderful.A referral to a consultant is entirely different to a referral to a private doc. A consultant, any sort, is either currently also working in the NHS and privately or retired and just now doing private work. A GP can refuse but unlikely, they are also instructed what to prescribe and do, etc

To answer your specific questions, If the bloods at GP very recent and on the same, or no, meds then that will be OK. Blue horizon, main site, still quote TUK 10. they have a finger prick.test or venous blood, Both totally reliable and the same Lab ( TDL) as most private hospitals , so acceptable to any doc. The venous blood, if you pay a private hospital to do it, expensive, if you know a nurse or Phlebotomist, or having other bloods done, they will usually fill the phial for you free. Even my terrible GP does. I cannot use finger prick as sticky blood. it is easy for normally blood, have a glass of water about 1 hour before, Soak hands in warm water immediately before.All bloods, first time easier to phone and use a credit card, they send which ever kit you request. Post it back, not the end of week because of post, they put the results on your e mail address with ranges, and a Harley St Doc, checks, anything very bad, they tell you. Results usually within 48hours.If you see any private consultant, if asked they will write to GP and request all the tests they require, you do not have to pay for anything other than consultations. Phone their secretary to ask about treatment. Laid down cost, more for first appointments and more for Profs. Ask the secretary.

I hope that helps.

Best wishes,

Jackie

[klicker in reply to Jackie]

Thank you so much for your information it really is extremly helpful and i am so grateful i just feel like i don't know where to turn as my doctor seems to just prolong any return to good health and i feel like like i'm in and out so very often with no real results and even worse nearly every apt I have i have forgotten whats happened within 5 minutes.

Thank goodness for this site and people like you - I really am so grateful,

Best wishes to you,

Klicker

[Jackie in reply to klicker]

Hi Any time,

Always write notes for yourself, anything medical , take them with.You do have to learn about it all, not just for thyroid either, I have multiple co -,morbilities and soon learnt that. GP `s in general are not good with thyroid disease, because common, they think simple, it is not. If you do not feel better then, find a good Endo, then ask for a referral ie do not have GP`s choice unless GP wonderful!

Best wishes,

Jackie

You will get better , you just need patients and the right treatment.ie it takes a long time!

[klicker in reply to Jackie]

Thanks again Jackie you're information is so helpful, it really does seem a long haul but hopefully heading in the right direction for some relief. I will keep you posted.

Best wishes to you!

Klicker

[Jackie in reply to klicker]

Stupid me, I meant co-morbidities

J

[klicker in reply to Jackie]

Lol

[shaws]

You can ask for a particular Endo to be referred to. If you email [e-mail] has a list of sympathetic NHS Endos and private doctors and there may be one near you..

[klicker in reply to shaws]

Thank you Shaws. It's not happening. I put in a letter requesting a referal but GP doesnt agree. I have the list and Dr. Toft is local.

[Heloise]

stopthethyroidmadness.com/l...

Here are some explanations. Your thyroid numbers are not really bad, perhaps just slightly off. Your C-reactive-protein is a marker for inflammation and very important to get that under range.

[klicker in reply to Heloise]

Thank you Heloise. It seems that while the GP suggests my results are normal and therefore dont need investigated is also choosing not to investigate the results outwith the range!?

[klicker in reply to klicker]

Got the book too so reading up thank you.