Another symptomatic newbie asking about tests!

Hi

Hoping for some guidance or failing that, a sympathetic ear.

Usual story of hypothyroid symptoms to a greater or lesser degree for years with 'normal' tests. In my last go round of this I was advised to go gluten free with IBS about 15 years ago which worked so I thought that was my problem. Yet here I am again. Menopause has been ruled out.

Weight gain, fatigue, scale dry skin etc. Plus now high blood pressure and spreading peripheral neuropathy. The list of symptoms I match is ridiculous. GPx2 both insist neuropathy is not related to thyroid problems and have referred me to other disciplines for investigation. I did manage to persuade one into testing antibodies but I'm waiting on that. Relevant test results I have atm:

July 2016

TSH 3.2 (0.3 - 3.94)

B12 490 (197 - 771)

Ferritin 47 (13 - 150)

Feb 2017

TSH 2.26 (0.3 - 3.94)

I know it's not a lot to go on right now and I daresay my antibodies will be fine too. Does anyone have any thoughts about next steps with a pair of non believing GP's? The fizzing in my feet is horrible and lack of sensation in my hand is very difficult to live with.

Thx in advance

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  • Get your vitamin D levels checked common to be low and then vitamin B can be low too

    See drgominak.com/vitamin-d-hor...

    There are two sorts of thyroid antibodies- TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) BOTH need checking. More common to have high TPO or high TPO AND high TG, but negative TPO and raised TG is possible, though rarer.

    If you have raised antibodies then, even if TSH is "in range" and you have symptoms NHS does recommend treatment

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

    Your B12 is not very high. Some people can still have symptoms at that sort of level

    Have you had folate tested?

    Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

    You might have more success seeing a functional nutritionist, if antibodies are negative and TSH "normal"

    If you can not get GP to do these tests, then like many of us, you can get them done privately

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

    Special offer at moment

    thyroiduk.org.uk/medichecks

    Or just vitamin D via vitamindtest.org.uk

  • Thank you, yes I will probably get one of the screening blood tests done. I was quite pleased with my B12. GP said it was good <sigh>

  • Welcome to our forum and I am sure you will get more advice from other members.

    It is not unusual to have a myriad of clinical symptoms but doctors pronounce 'normal' if they've taken a blood test for thyroid hormones.

    In other countries if a patient has a TSH of 3+ along with clinical symptoms they will begin on levothyroxine, also known as T4 which converts to T3 - the only acive thyroid hormone.

    Before the blood tess and levothyroxine were introduced around the 60's we were diagnosed upon clinical symptoms and given natural dessicated thyroid hormones and if symptoms cleared and we felt better, we continued on it.

    Nowadays, its all on a blood test which may never reach the 10, that the British Thyrid Association states is the magic number upon which we will finally be diagnosed. Doesn't matter how bad we feel in the years working up to, if every reachedm 10.

    Some doctors will prescribe if TSH is just over the top of the range which is around 5, but many do not.

    Also they don't know one clinical syptom but are willing to give a prescription for the 'problem' but not a thyroid hormone. Doesn't make sense to me but after all I am not medically qualified but none of the Specialists, doctors, cardiac dept, ever took a blood test at all and it wasn't till TSH was 100 I was finally diagnosed. I wouldn't wish that on anyone.

    Blood tests must always be the earliet possible, fasting (you can drink water) and if you were on thyroid hormones, you'd allow 24 hours gap between your last dose and the test and take it afterwards.

    This procedure keeps our TSH at its highest and might make it high enough to be diagnosed or, if on hormones, stop doctor adjusting dose unnecessarily.

    You can get a private blood test which will do all of the hormones the GPs don't do, such as Free T4 and Free T3. I will give you a couple of links as it is a case of reading and learning and asking questions in order that we can have some reasonable lifestyle.

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

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

    thyroiduk.org.uk/tuk/about_...

    You also need thyroid antibodies tested. If positive you will have an Autoimmune Thyroid Disease called hashimoto's which is the commonest form, and it in your blood test you should be given levothyroxine. Also called T4 a replacement which converts to T3, the only active thyroid hormone needed in our receptor cells.

    Someone will comment upon your ferritin which is low and always get a print-out from the surgery your results, with the ranges.

  • ferritin is way way too low

    b12 is actually not bad which is strange in PN

    lack of freet4 and free t3 is the vital info

    TSH is simply not enough to base any opinion on full stop

  • :) unless you're my GP it seems!

  • have you got a copy of the Pulse article by dr toft

    email louise.roberts@thyroiduk.org.uk for a copy and take that to your gp

    your gp and i would come to blows over their failure to see the obvious in front of their eyes

  • I haven't but I will. Thx

    PS it may come to that!!

  • If you had your ferritin tested in 2016 have you had it checked since? Have you had a full blood count (also called a complete blood count) as well?

    The reason for this is you need to see if you have iron deficiency anaemia or just a low ferritin level. Ideally your ferritin level should be around 70 however to ensure you are taking the right amount of iron supplements it is important to work out what type of iron deficiency you likely have.

    In the case of haemoglobin (also called haemoglobin estimate) you want it to be a minimum of 130g/L or 13g/dL not just in range. Be aware that in some areas the NHS levels for haemoglobin (or haemoglobin estimate) is deliberately lower than the World Health Organisation and NICE guidelines. Therefore if you have the results of a full blood count can you edit your post and post them up. If you don't have them go to your surgery as suggested by shaws and get them then start a new thread with all your test results in it.

    It is important to get your nutrient levels checked as SlowDragon stated as while neuropathy is most commonly linked to a vitamin B12 deficiency or sub-optimal levels, it can also happen if you are low in other nutrients.

  • I will go and get as much as I can from the surgery later this week. I am a sensible eating vegetarian. I don't have any ferritin results prior to 2010 when they realised my circulating Hb can be perfectly normal but my ferritin be seriously low. I do respond well to iron tablets.

  • I'm not sure if you are male or female but there is this myth that if you are iron deficient it is only caused by you not eating enough iron rich foods.

    If you are a menstruating female you have a higher requirement for iron particularly if your periods are heavy. Likewise if you are pregnant or breastfeeding. So you can end up iron deficient.

    If you have a thyroid condition, any disorder that effects your metabolism and/or any disorder that effects your absorption then you can easily end up iron deficient.

  • Female. After my last child was born my periods went from light to catastrophic hence the Ferritin level of 6 and I had an endometrial ablation so no periods at all now :)

    Long done with bfing too.

  • 100!!! Good grief!

    47 is good for me on ferritin. I went down to 6 at one point before an OP fixed that :) They do keep an eye on that as I have UC. Forgot that in my first post!

    If it was symptom based diagnosis I'd be happy.

    I do know that prior to July I'd had my TSH checked a few times since 2011 and it was a steady 1.5.

    I am taking this on board so thank you

  • UC is nasty but have you very very carefully checked that not one single piece of cookware is aluminium or non stick coated or goil or a george foreman type grill etc or that your water supplier is not using aluminium salts of any kind or flouride in their treatment works

    UC is very often caused by use of aluminium in one form or another and often hidden or not thought of

  • Pans all steel. Bake in ceramic. No George Foreman type stuff. Not sure about water but I do have long, long periods of remission with UC and it's pretty static in my bowel.

  • glad to hear that do though check fans on fan ovens and phone your water co

    i cant use my fan oven ....cos the fan is aluminium and the minute traces of aluminium in various things can have devastating effects on me ...i dare not go on holiday in most of devon or cornwall for eg

  • Goodness. We have had a new oven in the middle of me feeling horrible so I'd cry if my oven of joy was making me poorly :) Actually we're on our 3rd oven since diagnosis so hopefully not!

  • You would be stunned to know what they hide aluminium in and how heating it sends vibes through everything to affect the food and you ...especially gastric system

  • Not expecting anyone to necessarily reply to this as the results are so old. Something may jump out though. Useful to have them here for my reference though!

    Jan 2001

    TSH 1.63 (0.4 - 4.5)

    *Free T3 9.9 (3.0 - 9.5)

    Free T4 24.7 (10 - 25)

    *Total T3 2.9 (0.8 - 2.2)

    *Total T4 192 (60 - 140)

    TBG 437 (180 - 340)

    July 2001

    TSH 1.1 (0.4 - 4.5)

    Free T3 7.4 (3.0 - 9.5)

    Free T4 25.0 (10 - 25)

    Total T3 2.1 (0.8 - 2.2)

    *Total T4 185 (60 - 140)

    *TBG 410 (180 - 340)

    Thyroid peroxide A <1 (0 - 75)

    Jan 2002

    TSH 1.71 (0.4 - 4.5)

    *Free T3 10.6 (3.0 - 9.5)

    Free T4 22.9 (10 - 25)

    *Total T3 2.3 (0.8 - 2.2)

    Total T4 133 (60 - 140)

    TBG 284 (180 - 340)

  • TBG consistantly dropping i wonder why that is ...hmmm

  • Is it a Thing?

  • Thyroid binding globulin

    i guess its possible that it affects how you feel i do not know enough about it

  • Looking at your results it appears result wise you were bordering on hyperthyroid in Jan 2001and needed things at that level to feel well hence since levels have dropped bit by bit over the intervening years its possible your body notices the drop ...some people are very sensitive to such changes sadly very few doctors would recognise that situation

  • I do remember at the time that hyperthyroid was mentioned. I didn't feel well then mind you!

  • Perhaps the question should be directed at why the TBG was so high to begin with?

    We rarely see TBG test results posted here. Why did they decide to test you?

    Here is a summary of factors which are known to affect TBG levels.

    Increased TBG

       Drugs

          Estrogens

          Tamoxifen

          5-Fluorouracil

          Heroin/Methadone

          Clofibrate

          Nicotinic Acid

          Perphenazine

       Pathophysiologic conditions

          Pregnancy

          Hypothyroidism

          Acute/chronic hepatitis

          HCC/PBC

          Adrenal insufficiency

          AIDS

          Angioneurotic edema

          Acute intermittent porphyria

          Oat cell carcinoma

       Congenital conditions

          TBG excess

    Decreased TBG

       Drugs

          Thyroid hormones

          Androgens

          Anabolic steroids

          Glucocorticoids

          L-asparaginase

          Interleukin-6

       Pathophysiologic conditions

          Hyperthyroidism

          Critical illness

          Sepsis

          Hepatic failure

          Nephrotic syndrome

          Diabetic ketoacidosis

          Chronic alcoholism

          Malnutrition

          Acromegaly

          Cushing' s syndrome

          Extreme prematurity

       Congenital conditions

          TBG deficiency

    Albumin Transthyretin (TTR) Abnormalities

       Pathophysiologic conditions

          Nonthyroidal illness

          Malnutrition

          Inflammation

          Pregnancy

       Congenital conditions

          Familial Dysalbuminemic Hyperthyroxinemia, FDH

          Transthyretin-Associated Hyperthyroxinemia, TTR-AH

    Derived from information here:

    thyroidmanager.org/chapter/...

  • I can't remember why exactly TBG was done except as part of a thyroid screen because I felt hypothyroid. I did smoke (don't now) and I was on the progesterone only pill but none of the alarming things in the top half of your list were involved!

  • I know some are rather alarming, nicotinic acid (one form of vitamin B3) didn't seem too much to be worried about. :-)

  • Definitely on the routine side of things :)

  • Just to update. My folate levels came back as 19.4 (4.6 - 18.7) in August so that's good.

    The Peroxidase Antibody test came back as 13.1 (0 - 35) so that's not solved anything.

    So next step will be doing my own tests and seeing what they show.

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