Where to now???

Today I received a letter from the endochronologist I saw 6 weeks ago.He said no need to see him again as the synacthin test was fine (didn't give me any details) and I do not a have thyroid issue as results say it is functioning perfectly . I have tons of thyroid like symptoms and some people on here commented on usual content of my results. Maybe I am that person who is always unwell. Finding it hard today to motivate myself to keep trying to get a diagnosis.Would anyone here have any idea of what to do next. A blogger in America named Tania said i could have hasimotos as my antibodies should be zero but i am waiting for her to get back to me.Will post results below again for anyone who wants to comment.Please do.😕

BIOCHEMISTRY

CRP 2.10 <3.0 mg/l FERRITIN 76.9 20 -150 ug/l

THYROID FUNCTION

FREE T4 L 11.43 12-22 pmol/l

FREE T3 6.02 3.1-6.8 pmol/l

TSH 2.19 0.27-4.20 lu/l

REVERSE T3 16.0 10-24 ug/l

T4 TOTAL 80.7 64.5-142.0 nmol/l

IMMUNOLOGY

ANTI-THYROIDPEROXIDASE abs 10.9 <34 klu/l

ANTI-THYROGLOUBULIN ABS 20.8 <115 ku/l

VITAMINS

VITAMIN D (25OH) L 44 Deficient <25 nmol/l

VITAMIN B12 L 185 Deficient <140 nmol/l

serum folate 12.27 10.4-42.4 nmol/l

15 Replies

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  • You need to improve your vitamin B12 and vitamin D status. Probably there's other vitamins (not tested) that could be better too. Check your diet (sit down and google the foods you eat to see what you may be missing. It takes a while but it's an educational exercise.) Look up 'good sources of vitamin B12, vitamin A, copper, zinc, magnesium, etc. and see what these are. If you are not consuming foods rich in vitamins and minerals, then either change your diet or take supplements. Better to modify the diet though.

  • Thanks for reply.i am on B12 injections and i have cut out gluten and caffeine after a visit to a nutritionist from my diet.lack of morning coffee is a tough one.linda

  • Agreed! That very low B12 will be causing hypo-like symptoms. I think it might be an idea to ask your doctor to check for Pernicious Anemia. You might need injections to raise it. Certainly your Free T3 does not look hypo, although your Free T4 is rather low, and your TSH is a bit high. But no sign of Hashi's.

    Get that B12 seen to, and see how you feel before going any further down the thyroid road. :)

  • Thanks for reply.I am currently self injecting as my gp felt b12 not a big issue. She agreed after letter from endo to do a course of one injection for four weeks which improved my finger tingling but it started up again once course was finished after 3 weeks. I am now injecting every second day for last 5 days and will move onto once a week.Do you have any idea what low T4 and high tsh could mean.i also have fibromyalgia and I was contacted this morning by a doctor who prescribes NDT for pain relief hopefully this will sort other issue too.Today is looking brighter as i have new direction.

    Many thanks linda

  • Well, your TSH isn't that high, even though your FT4 is below range. Could be that there is a slight problem with the pituitary, perhaps, but not enough to worry about at the moment, because your FT3 is good. And it's low T3 that causes symptoms, not low T4.

    Did your doctor test for pernicious anemia? Because she really, really ought to, with a B12 that low when you're on injections! Even if she does thinks it's no big deal, l can assurd her that it's a very big deal! And it will be causing a lot of your symptoms. So, you really ought to get that and the D3 sorted before you think anymore about thyriod. Even if you start NDT, there's a chance that it won't do anything for you if your B12 and D3 are so low. It is more than likely that yhey are causing your fibro symptoms.

  • Wow I didn't realise the serious symptoms they can cause.I think I will scream out loud at the thought that the last 23 years of chronic pain could have been solved with ease.My Gp is of opinion that there is no proof that injecting b12 is of any benefit and that there is no proof it works.I can't believe her attitude as she is normally open to any suggestions I have regarding treatment of my fibromyalgia even prescribing off label drugs to help.I think I annoyed her when I organised my own private tests to find out why I was feeling worse.Is it a simple test to diagnose Pernicious Anemia and will it make a difference that I am supplementing b12 to the end result.Ldn has been mentioned as a pain support for fibro so I feel I have to give it a try. Thanks for your detailed reply the help here is fantastic

    😊Linda

  • Linda, why don't you pop over to the Pernicious Anemia forum on HU? They'll be able to answer all your questions much better than I, and give you links and things.

    Doctors just don't do nutrition in med school, and they are encouraged to think that vitamins and minerals are irrelevant.

  • all i can say is low vit d3 and b12...will make you feel like you have a thyroid disorder....take the b12 5000 under the tongue and i would suggest 5000 d3 a day......and recheck in 2 mths....it happened to me...and i felt terrible

    do you have any digestion red flags such as bloating or gas or constipation etc hence bad digestion can make you not absorb vitamins from foot and therefore betaine with pepsin or ezymes with meals to help, and sometimes b12 being low can signal adrenals being low and other hormones, or ferritin being low is common with that too.....

  • I have no issues gastrointestinaly so diagnosis of b12 deficiency came as a surprise.I only had it checked as part of package with blue horizon. What started me down this road was a possible link between fibromyalgia and thyroid.I am supplementing Vitamin d and self injecting b12.

  • Can I ask how you obtain and self inject with b12. Myself husband and two teenagers all have very low b12 . Yet my mother and brother have peniasias anaemia but live in a different area. My GPS

    are not interested.

    regards kate

  • Hi there.I went onto amazon.de ,this is German site and Google translate helps.I ordered 50 vials of Hydroxocobalamin 100 needles (sterican in german) size 23g ,alcohol wipes and the total cost was 62 euro not sure what that is in pounds as i am irish.The items arrived within 3 days and were very well wrapped.It took me a few hours to pluck up the courage to inject but the thought was worse than event.I injected into my upper arm at 45 dg angle and only put it in three quarters of the way. It only hurts when you break the skin and of course it stings when you push the plunger in (slowly).I feel great that I am in control of my health and dont need to ask for help from doctors who aren't interested.Do they ever stop and think nobody wants to be sick and if they listened to what you actually said not what the book says than there would be a lot of happier patients who don't need antidepressants. If I had been offered B12 every time I was offered antidepressants I wouldn't be in the place I am in now.Sorry for rant.go online and purchase asap you won't regret it.☺Linda

  • T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms.

    T4 is not an active hormone should not impact on how you feel.

    Your Free T3 is near the top of the normal range and most people would feel well with this level. With a free T3 result as high as this most people would have a TSH close to zero. These blood test results and the fact that you do not feel well could indicate thyroid hormone resistance, also known as impaired sensitivity to thyroid hormone.

    This is a genetic condition so if there are close family members with thyroid, fibromyalgia, CFS or depression this would further support this diagnosis.

    With this condition you need very high levels of T3 in the body and the best way to achieve this is by taking T3.

    PS The synacthin test is simply shows that there is still some life in your adrenals - it gives no indication as to how well they are working.

  • Your reply is so interesting.I have fibromyalgia and I have an aunt who also suffers. Who would prescribe t3 ,my gp isn't interested and the endo I saw hadnt a clue.I am meeting a doctor in Dublin Monday 27th who is willing to give me low dose naltroxene (hope spelling correct) for my fibromyalgia pain and i believe this also helps with thyroid issues. Is it possible that a blood test would confirm impared sensitivity to thyroid hormone or is it a case of ruling out other conditions. Thank you so much,this is definitely an area I will explore. Having people reach out to help means a lot as family /friends are probably bored as i am sick since aged 20,now 43 .☺linda

  • Hi Sandy. I actually purchased the book weeks ago.Thanks linda

  • I reply to a lot of posts on thyroid resistance and don't remember most of the names, although I did think you sounded familiar.

    I feel that the book could really help you.

    I am in the process of updating the book and when complete I will ask Amazon to make it available to all who have already purchased it.

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