confused about advice and test results

hi - just found this after 10 years on Thyroxine .. I'm feeling increasingly anxious, depressed, fuggy and have recently had some tests done. My results - read out by doctor over the phone - are T4 20.9 and TSH 0.04. Doctor and endocrinologist says these are normal but they did some further tests - Ferr is 38, Cortisol 204 (taken at 9am), Auto-immune profile shows thyroid antibodies very high, white cells borderline/low, b12 normal but pernicious aenemia,. I'm due to have another Cortisol test next week (3 bloods + and injection)

I don't know what all this means.. except that I'm trying to avoid going onto anti-depressants (which is what the doctor wants, along with reducing my thyroxine). I'm currently taking 150mg and was on 175mg (for about 8 years).

would welcome any thoughts on what to do next!

50 Replies

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  • Because b12 and ferritin are so low your body cannot utilise the levothyroxine t4 and convert it into the t3 that every cell in your body needs to function

    B12 /PAmust be sorted immediately

    Iron plus 2000mcg vit c taken 4 hours away from thyroid meds also vital

    You need t3 /liothyronine not levothyroxine in the interim as your free t3 result will be at very bottom of range INSIST they test free t3

  • thanks for your reply. What is a t3 test.. I've never had one done? They said my B12 was normal.. but I'll ask again about the pa. I've just bought some ironspa.. A little confused about the anaemia - The doctor said that was not anaemic (haemoglobin result was normal).. and must admit I dont' know what PA is.. will look it up!

    My doctor didn't want to do these further tests.. and wouldn't refer me to an endocrinologist .. it's only because I saw one privately that I've got this far. I therefore feel very doubtful that I can insist on anything..

  • How can your B12 be 'normal' if you have Pernicious Anemia? Besides, 'normal' just means 'in range', and isn't necessarily 'optimal', which is what you want.

    You should ask your doctor for a print-out of the results, so that you know exactly what was tested, and what the results were. With the ranges, of course, otherwise, the numbers are meaningless for most tests. Then, post them on here, and members will be better able to advise you.

    I don't think your doctor knows very much about thyroid, does he. If he did, he wouldn't want to be reducing your levo and giving you antidepressants, instead. But he gets paid for prescribing the antidepressants, not for the levo.

  • good point! I'll ask next time about the Pernicious Anaemia and B12. thanks! so appreciate all the replies...

  • Don't forget to ask for a print-out of your results. If you're in the UK, it's your legal right to have one.

  • I, too, have pernicious anaemia. My mother also had PA and was eventually told by her doctor after years of quarterly injections that her blood was now fine and didn't need any more. My sister and I thought that was great - little did any of us know what was before us and it was dreadful.

    Many people with P.A. feel they need more than a quarterly injection.

    So, from now on, the procedure is that when you get any blood tests:-

    For thyroid :

    The earliest possible time and don't eat before it although you can drink water.

    Allow 24 hours between your last dose of levo and the test and take it afterwards.

    I believe the updated B12 should be around 1,000 to prevent neurological damage not the range they use at present.

    Always get a print-out with the ranges and we are now on a learning curve if we want to protect our health as we are being failed quite frequently without realising it.

  • thanks for all that info.. that's useful to get an idea of what B12 should be. I'll check with my results.

  • b12deficiency.info/signs-an...

    The above site will give you all the info on B12. Ranges START at 500 in Japan and anything under that level can present with neurological symptoms. All confirmed in the link above ....so read all you can to be well informed.

  • HI - just got my print out.. lots of results, but I think the pertinent ones are:

    Thyroid Peroxidase Ab - 674 (there's a note to say it should be under 100)

    Anti-parietal abs - positive

    Plasma Viscosity 1.48 (should be 1.50 +)

    Vit D 76

    Platelet count - Neutrophil is too low at 1.76

    Basophil Count too low at 0.13

    Serum TSH 0.04

    Cortisol 204 (taken first thing in the morning)

    B12 532

    Serum Ferritin 38

    I hope that's not too much info - but if you have any thoughts, I'd be grateful!

  • Scorp,

    Welcome to our forum and sorry to hear you are not feeling well.

    Thyroid test results look good on the surface but without ranges it is difficult to tell. Because good thyroid hormone synthesis depends on multifactorial conditions, it is possible to have "normal" results but still be hypothyroid. Doctors don't always test the T3 hormone which is the active all important hormone and responsible for well being so required for better assessment of thyroid function.. Members use private labs - link below.

    Your iron level is low. The body needs iron for carrying oxygen and assisting in digestion (enzymes). When iron levels are low it slows down the conversion of T4 to T3 (deiodinase activity) as requires iron containing enzyme thyroid peroxidase to produce the thyroid hormones. Optimal is above 75.

    Thyroid antibodies need to be managed as elevated levels cause inflammation in the body and high cortisol levels, predisposing us to further disease. Many members have found a gluten free diet helps lower antibodies.

    A low white blood cells count is common in auto immune disease because the immune system becomes overtaxed.

    If you have PA you might need Vit B12 injections or to supplement high doses of Methylcobalamin. You could ask on the PA forum.

    healthunlocked.com/pasoc

    Have you Vit D and folate tested ? ? ...

    Both low thyroid hormone and unbalanced cortisol levels (adrenal stress hormone) are known to bring about symptoms of depression and anxiety. Optimising thyroid hormones, iron and nutrients and eating well will strengthen the immune system and improve adrenal and mental health.

    It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

    .

    Gut/thyroid connection

    chriskresser.com/the-thyroi...

    .

    Private labs testing

    thyroiduk.org.uk/tuk/testin...

  • thank you for all that information.. I will look into dietary stuff for strengthen immune and gluten free. And thanks for the link to the lab testing. It has cost me a fortune to get one consultation and tests done !

  • scorp,

    Endos can cost a fortune but even with a private consultation many tests can be done on the National Health. Discuss with your endo and GP.

    My GP does all my thyroid and nutrient//vits testing as requested by my endo. I then send on the results.

    The only thing I struggle to get retested are thyroid antibodies as the medical profession hold this false belief that the level doesn't matter.

  • are thyroid antibodies the T3 test? I'm going to get that done privately I think.. someone mentioned Blue Horizon, so will check them out.

  • scorp,

    No, the T3 test refers to one of the thyroid hormones.

    Thyroid antibodies are made in response to an attack on our thyroid gland. Hashimotos is determined by thyroid peroxidase antibodies (TPOAb) and/or thyroglobulin antibodies (TGAb).

    .

    Private labs testing

    thyroiduk.org.uk/tuk/testin...

  • thanks for your message.... and the link. I've learn't a lot today!!! I'll get on with the tests now I think and not wait for the doctor. People are recommending Thyroid +11.

  • here are some bits (marked as abnormal) from my printout RADD - might be too much or irrelevant info, but just in case you have any thoughts

    Thyroid Peroxidase Ab - 674 (there's a note to say it should be under 100)

    Anti-parietal abs - positive

    Plasma Viscosity 1.48 (should be 1.50 +)

    Vit D 76

    Platelet count - Neutrophil is too low at 1.76

    Basophil Count too low at 0.13

    Serum TSH 0.04 T4 20.09 (I gave those before)

    Cortisol 204 (taken first thing in the morning)

    B12 532

    Serum Ferritin 38

    I hope that's not too much info - but if you have any thoughts, I'd be grateful!

  • scorp,

    You have Hashimotos Auto immune disease as denoted by elevated TGAb.

    You are positive for anti parietal cell antibodies. The parietal cells make and release a substance that the body needs to absorb vitamin B12.

    Plasma Viscosity - I thought this to be an inflammatory marker .. your is lowered ? ? ... I don't know.

    Vit D is ok just. (Optimal is about 75 - 100).

    WBC are low (common in auto immune disease as advised above).

    Thyroid hormones are fine but T3 would give a clearer picture as to why you are still symptomatic.

    Cortisol - looks low but not sure without ranges and measurements (Mg or mol ? ). . but for 9am cortisol anything under 300 is usually offered a synacthen test ...

    B12 is low given your PA. You will need to supplement.

    Ferritin is low (optimal is above 70). You will need to supplement as red blood cells require iron, Vit B12 & folate to be formed. Also good iron levels are important as the iron containing enzyme thyroid peroxidase is required to produce thyroid hormones.

  • Scorp,

    For curiosities sake I looked up plasma viscosity.

    It is a plasma protein that changes when inflammation is present similar to ESR. It is used in diagnosis for a variety of conditions and high levels usually indicate underlying & unwanted pathology but a low level can usually be ignored ...

  • big "thank you" radd.

    That is so helpful to know - and really clear. If you're not a doc, you should be! I really appreciate the quick response .. it can all be so worrying.

    I shall research Hashimotos, get my T3 done and supplement B12 and Iron. (synacthen booked)

  • Resist changing your meds! How do you feel? Thats the most important thing.

  • Hello. Please don't fret/ panic and feel isolated by all this. I have found well meant advice on communities a bit daunting when they require you to do things that you just can't envisage doing.

    The advice is often very good and sharp but the reality is that you may already be gluten free, living an optimal lifestyle etc and still be feeling rubbish - as I often am. Also, getting printed results off your GP can be much harder in some practices than in others. My current practice, for example, makes it impossible for patients to get their blood results printed off apart from asking GP to write them down. They tell you if anything is wrong then the GP will phone - they won't print off because "if everyone asked then we would be printing constantly". I don't want to risk angering the GP or reception because I have to choose my battles carefully these days. But if I want them enough I will tell small white lies about needing them to email or show them to a private consultant. They don't like it but have reluctantly obliged so far. The NHS can withhold this information by law or make you pay for print outs or buy a copy of your records I believe. Different practices have completely different policies.

    I would advise that, as well as considering that doctors may be wrong, you also consider alternative reasons for your unwellness as I am doing just now. Not everything comes down to B12 or the thyroid - although with high antibodies it might in your case. If you have been diagnosed with Pernicous Anaemia you will be taking B12 already , and your results will obviously reflect this.

    Other less common autoimmune diseases, such as Sjogrens, Vasculitis, Lupus and RA are all systemic too and can make you feel rubbish - as can Coeliacs Disease and under treated Pernicous Anaemia (PA). I don't know this for sure but I think they can probably cause high thyroid antibodies too. And there can be plenty of crossover with other, rarer autoimmune diseases.

    The best way to try to make progress in my view, is to go back to the nicest GP in your practice and explain how you are feeling and discuss. Also ask, as nicely as possible, for your blood test results so you can learn to understand it all better for yourself. If this doesn't work then offer to pay for print outs - if necessary reminding them firmly that it's your body, your blood and your health that is at stake.

    If they continue to offer you antidepressants then I suggest that you politely decline and point out that it seems odd to you that they are treating your thyroid by blood results alone rather than symptoms - but are simultaneously offering you powerful antidepressants, that can cause a whole host of side effects and problems (and hellish to get off!) despite having no hard evidence that these are needed or will help. Again I try to find a balance between being polite and friendly but firm/ assertive.

    This advice is born of long experience - but you need to follow your own instincts about what approach works best for you. I hope it at least helps a bit. Meanwhile go gently with yourself if you are feeling lousy - and try to be methodical as possible in working out what is causing what - keeping a symptoms journal is a good idea if you can find the time. Twitchy

  • thanks for your advice.. yes, I need to find a friendly doctor at this new practice. I think, without meaning to, I have got into a battle of wills with my 1st doctor.

    I'll persevere to get clearer results - armed with the information from these replies, I feel a bit more confident to go back with some questions.

  • Hi Scorpo

    I have been on all sorts of antidepressants in the last 7 months, did try to tell the doctor that I think they were affecting my thyroid, had a private blood test and a private Endo...... Last Wednesday I couldn't stand anymore side affects from the antidepressants, I decided to cut down went to the doctors again for a program to come off them, he now agrees with me, and says, I don't think you should be on any AD's, and I thought, praise the lord, he is listening to me, I have been to hell and not quite back yet, I will never take an antidepressant again..... I do have a nice doctor, and he believes in me now, that was such a relief, as all my life I was on tablets hiding the fact I had a thyroid problem, it wasn't until I stopped Valium, that the thyroid showed its self.... never had a good doctor, so it's nice to have one that believes in me now....... so please don't let your doctor put you on any AD's....... Hilary :)

  • The Data Protection Act, in the UK, gives patients a legal right to access to their results. Surgeries are allowed to charge a small price if you are having a lot of pages printed. There are very few cases that allow a doctor to withhold information. But a lot of doctors will try it on to maintain the upper-hand, and the power. Knowledge is power, which is why they don't want you to have it.

  • You are entitled to your results by law (important to get the ranges) though you maybe asked to pay a small charge.

  • I have been told this here but my GP disagrees. I think they can withhold if they feel it's in the "best interests" of the patient not to see these ie patient thought to suffer from "health anxiety"?

  • The law that says this is the data protection act I think, 1998. They can refuse if there is something on your records which you don't already know and they think knowing would cause you anxiety. If they are already telling you results over the phone, which is what you are asking for, what's the problem? Inform them, (politely of course!) That you are entitled to them under the Act and want to keep records. I got my results from the last two years free, but had to pay £10 for copies going back for 10. Tell them the reason you are anxious is because they are refusing to give you your results!

  • Sod what your gp says, its law, i have been suicidal lately and get copies of all my test results

  • oh dear.. I hope you feel better now. I feel a bit more confident about the questions to ask her next time and will get a print out.

  • I suggest you phone up the Office of the Information Commissioner to find the grounds on which a GP or any other medical practitioner can refuse to give you part of your records. (Phone number 0303 123 1113 during office hours)

    Unless your records are hiding sexual abuse or something similar, or matters of national security there are no legal grounds to hide your medical records from you.

    Years ago I had a private hospital refusing to give me my records. (This as a completely different issue) I followed what the Information Commissioner site said. Eventually the Information Commissioner had to write a letter to the hospital and I got my records and plus an apology.

    I've never had a NHS GP refuse to give me copies of all or part of my records even though their admin staff have on occasions been difficult.

  • It may be different in Scotland where I am.

    From bitter experience I know that people who attend the GP a lot, as I have done, often get written comments on GP notes that they don't want their patients to read. I have actually experienced this personally, but the GP in question was brought up short by what she wrote about me - having only met me the once and got it badly wrong. I made a formal complaint which was upheld and I think the consequences probably affected her professionally.

    I do feel very strongly that people should be able to access their own notes and blood test results. But I know that many of us will use these to do our own research and this gives doctors a major headache in many cases. I don't care about their headaches at all because they are handsomely remunerated. But Ido believe this is the real reason that my GP practice is reluctant to give patients their blood results - me in particular because they see how I've reacted to comments in the past!

    If you are a very combative patient then this can lead to becoming stigmatised in ways we can't always anticipate. So I personally like to try to guard my reputation if possible . If I've had to see a lot more of GPs than I'd like it's because I have a rare, multisystem autoimmunity and severe allergic reactions to prescribed medications -not because I'm a hypochondriac. But even those few people with clearcut health anxiety deserve compassion and understanding from health professionals. So I agree we should keep these doctors on their toes and make them consider very hard what they say about us in notes.

  • The Data Protection Act covers Scotland so what you are probably experiencing is doctors not used to patients exercising their rights.

    You don't need to be combative for doctors to make things up about you, and they don't always write down the issues they have with you as doctors and other medical practitioners discuss patients with one another.

    One issue many doctors have is they are unable to admit they don't know what is wrong with you.

    In some cases, especially when they think you don't have any medical knowledge, this means they think they can get away as just classifying you as crazy, and giving you antidepressants or telling you to go away. In cases where they are aware you do have some medical knowledge they tell you to go and find out yourself!

  • I very much agree with you.

  • How can your B12 be normal but have pernicious anemia? Are you being given B12? I've just had bloods which state my cholesterol is raised yet I'm on a healthy diet. When I asked what my thyroid levels were I was given one result, no T type mention, as 2.5 confused as well because I'm feeling like you and half of my thyroid has been removed.

  • I don't know.. ! one of the questions for my next GP visit. I've got all the cortisol tests happening on the 1st so will book an appointment soon after that.

  • I know too well how frustrating this can be. I have blooming doctors receptions telling me what things mean when they obviously haven't a clue. My daughter is an experienced staff nurse and she gets very angry about what's happening

  • 2.5 what , apples or pears? Demand the printed results.Then explore private tests.

  • It is difficult to get a t3 blood test done in uk, even if your GP asks for it often the lab will refuse to do it. That is because the wonderful people that run the NHS believe t4 is the only replacement therapy required and t3 is not necessary. I was in a similar situation last year and decided to get a private test done with blue horizon when I found out it was only a little more money to include loads of blood tests I had loads done.

    For me I had been blaming my symptoms on my hypo but it turned out I was b12 deficient but not enough for my doctor to treat me as the NHS also in their wisdom believe we only need treating when the levels are so low that we have pernicious anaemia. If you live in Australia Japan and many other forward thinking countries you would be treated far earlier.

    My GP is excellent and forward thinking if approached right and did give me injections as a trial and the improvement was astonishing. He has learned more from me in last 6 months than ever before as all doctors have is guidelines with one size fits all.

    My advice is find out what your results are and post them for advice. Don't assume as I did that all symptoms are due to your thyroid problem as a majority of thyroid patients also have b12 and vit d deficiency.

    For me after 45 unstable years on thyroxine my life has started

  • that's interesting.. thank you! I'll check out Blue Horizon on Monday.

  • A few posters on here have poor vitamin D levels. This again on it's own or in combination with poor vitamin B12 and/or ferritin and/or folate levels causes significant problems.

    So get while getting them all tested is expensive it is worth it.

  • I recommend the Blue horizon plus eleven test - this will check amongst other things - FT3 level, both types of antibodies, B12, vitamin D, folate and ferritin.

    As the others have said, we need good (not just "in range") levels of all these for thyroid hormones to be able to work

    No medic ever checked my vitamin D in over 20 years (it was rock bottom) .....like many others in here it wasn't till I took control and started getting my own tests done via blue horizon that I am finally making progress. Medics seem to have no idea how important vitamin and mineral levels are with thyroid conditions.

    As you have high antibodies this means you have autoimmune Hashimoto's. Many of us have found adopting a 100% gluten free diet can improve symptoms, and lower antibodies too. (I have also found my B12 has also improved since going gluten free, but I don't have PA just "leaky gut")

    Other supplement that can help lower antibodies is selenium.

  • I'll look into Selenium - thanks.. and also Hashimotos! am currently gluten low The doc says by B12 is normal.

  • Only eating a small amount of gluten won't work, it has to be total avoidance.

  • But if you want to exclude Coeliac's Disease as cause of your symptoms then you need to eat a full gluten diet for up to six weeks or longer to get an accurate result.

  • Normal is an opinion not a result :-)

  • Welcome to our forum and if it is possible, you don't want anti-depressants particularly if hypo as T3 might be more relevant (I am not medically qualfied)

    If we want to get well and feel we have normal health, we have to read and learn and source what will be best for us.

    Unfortunately if in the UK, they have been instructed that levo alone is the one to be prescribed. The addition of T3 to my T4 was very helpful. I am now on T3 only and source my own. Many on this forum source their own hormones.

    Natural Dessicated Thyroid Hormones (introduced in 1892) contain all of the hormones our own healthy gland would produce.

    Levothyroxine contains only T4 which has to convert to sufficient T3. T3 is the Active hormone required in all our our billions of receptor cells and the brain contains the most.

    Psychiatrists can prescribe T3 and some doctors will add some to our T4 but the guidelines in the UK, state that levo alone is sufficient. I think the 40,000 members would disagree wholeheartedly with this but I also know that others do fine on levo but they wouldn't be on this site.

    This informs you the importance of the T3 hormone:

    hormonerestoration.com/Thyr...

    If we complain to doctors of remaining symptoms they will classify the moans as 'depression' and thus prescribe anti-d's instead (Why - I've no idea). They just don't understand the effect that helpful hormones can do. If psychiatrists can use T3 for their patients (not necessary hypo ones) why cannot doctors? They rarely test Free T4 and Free T3.

    evolutionarypsychiatry.blog...

  • Hi Scorp0811 and all repliers - Just thought I would mention how important the B12 result is. I recently had my tests done and my B12 was 309 which the GP said was normal. It was only when I posted my results, that the guys on this forum told me to sort my B12 levels (which I'm doing). I went back to my GP who basically dismissed it, so if you get dismissed like I did, do your own research on the effects of low B12. It's an eye opener....

  • hi.. thanks for that Di588

    I'm curious.. as I cant' get my GP to do anything much! If the GP doesn't think anything needs to be done.. how do you get your B12 up? Is it by injection.. and where do you get it done?

  • On this site I was advised to take a methylcobalamin B12 for best result, someone else advised me to us Boost oral B12 spray (£11.99 from Holland and Barratt). I have only just started taking it. I had been feeling unwell and neglecting myself until I found this site. I have to go back in 2 months for more tests, so here's hoping this will work. If not I'll do some research and see what I can do. Good luck

  • b12deficiency.info/signs-an...

    The above link is one I post on a daily basis - maybe even more :-) Please read it all very carefully to be well informed. Important to be tested BEFORE you start supplementing - otherwise further testing is of little value.

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