Thyroid. Rising TSH. New to Community

Hi everyone, I am new on here, trying to sort my health out. I have not been diagnosed with a thyroid issue but I have quite a few hypothyroid symptoms. Most distressing is burning mouth, tongue, gums, lips and burning finger tips and tingling toes. As well as losing too much hair, sleep issues, sex drive totally gone. I have suffered from burning mouth for a while. it disappears and then comes back - maybe because of my eratic B vitamin supplementation. But it's back with a vengeance :( My other symptoms along with memory/brain fog/possible blurry vision (certainly not good) low temp etc etc. I already have an autoimmune disease (Rheumatoid Arthritis) and so have blood tests. I have been watching my TSH climb over the years - now at 3, six months ago was 2.5

My first question is: I have heard that TSH can be variable and not to rely on one blood test, but there again I have symptoms - so I think I will have to take my head out of the sand.

Secondly my GP marked my blood test print out as normal no action. No surpise re TSH but shocked re didn't join the dots re ferritin which I believe ideally should be 75 at least under 100 and mine is 140 and has been for a couple of yrs since menopause, so I asked for more indepth iron tests. And my serum is low and saturation percentage is only 18%. So I gather anemia of inflammation. Through diet and supplements I have managed to get my CRP down from 18 to 1.9 which was amazing after years of struggling. But that was 6 months ago, it is now up at 4.1. So my question is, being that such stored iron is not good and advice is to reduce by donating blood will this make me ill due to low useable iron? When I had periods, I always from my 20's had bad migraines during that week and with hindsight wonder if my useable iron fell too low then.

Thirdly, I believe that thyroid function is responsible for making LDL receptors on the cells. Not enough thyroid hormone, not enough receptors and too much LDL hanging around in the blood. My Cholesterol seems high, has been 7+ now 6+ , seemed it reduced as my inflammation marker dropped. But my Cholesterol is high because I have HDL percentage. So despite the high cholesterol would that mean I have enough LDL receptors?

I worry about my TSH climbing knowing it should be about 1 or less and the symptoms but can't face the prospect of tackling the GP. It is difficult enough having an autoimmune problem and preferring to use nutrition to help rather than the medical systems dastardly meds for RA. Trust me, it does not go down well. I feel because I have one auto immune that I may have Hashimotos. Could I ignore the whole FT3/4 Reverse T3 pistols at dawn scenario and just ask for TPO and the TGA (is it?) antibody tests? Just with the burning mouth symptoms going and then coming back I thought it may be antibody realted. Or can I just dose myself up with Premier Research Lab B vits and see whether it goes and forget the GP?thyroid confrontation? I dosed with and my result 6 months ago was 550 from 300 but has dropped to 400 now. I just want to stop worrying and stressing over :)

17 Replies

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  • I'm sorry I'm afraid I can't answer all your questions, but for your thyroid, ideally you should be tested for t3/t4 and antibodies. Rt3 is a different story, don't worry about that for now, but the others are necessary. You may have 'normal' tsh but low t3/t4 and/or raised ABs, all of which can spur treatment sooner rather than later if your doc is helpful and flexible. You can have private testing but if your doctor will take no notice you'll have to have a plan b.

    It is said that the earlier the test the higher your tsh is likely to be, so you can try that. Fasting for the morning of the test is also meant to help.

    Are you seeing a rheumatologist? Maybe it's time to diversify if your gp is not being helpful (or just time to find a new gp).

  • Thank you for your quick response and your advice. I haven't raised Thyroid with my GP, its just that they don't seem very knowlegeable about much at all and so not looking fwd to it. TSH is just part of my annual/6mnth blood tests re Rheumatoid and I have been watching it climb and symptoms and knowing it shouldn't even really be at 2. My tests are 12hr fasting. 3 yrs ago I mentioned Burning Mouth symptoms and she said she had seen quite a bit of but that was it - she obviously had, had no desire to gain any knowledge to help her other patients, so my faith in GP's is pretty non existent.

    No I do not see a Rheumatologist. I did for 19 yrs until she retired - the Professor of the dept. Very supportive, knew that I did not want to take drugs and would rather use a nutritional approach. Was interested in what I was doing and just before she retired announced to me that in the hospital was a gastroenterologist who thought the same way I did, believed in intestinal permeability (which I had raised with her 19yrs before) and that he had been/was a top researcher in Europe and she must say that there is evidence that the Leaky Gut condition exists and is causal in many conditions. Unfortunately the replacement Rheumatologist on my second appointment discharged me, he told me his job was to manage people on drugs and as I wouldn't take any, he saw no point in seeing me, that there was no point me being transferred to another as everyone in the dept was under him and thought the same way as he did. Our new breed of 21st century doctors! I have seen many different GP's in our practice, all very nice but.. we don't just need nice

    So you sound as if you are suggesting that I may have trouble getting my antibody tests and FT3/4. I did see the gastroenterologist mentioned above 4yrs ago and he took his routine blood tests - strangely enough they included Thyroid antibodies which were then in normal range (I had no thyroid symptoms then and so thyroid was never mentioned, I just noticed he had requested and were in the results) I think that says a lot then if a Gastroenterologist asks for routinely but people with symptoms sometimes are refused.

    Thanks Clutter, my Burning Mouth/fingers comes and goes and when I didn't get anywhere with my GP I googled and researched. Seemed to be a concensus was caused by deficiency of B12 and mentioned in Thyroid symptoms but perhaps that is because B12 can be associated with Thyroid issues. I did start supplementing and blood levels rose to 550 (from previous 190, to 290, 385) but now since stopped supplementing for 6months is now 400 at my recent tests. Yet I eat red meat and liver once per wk. And now the burning mouth has come back viciously but have noticed fingers toes continually. So obviously shouldn't have stopped B12. I don't think you can rely on serum B12 anyway. Does anyone on here get RBC B12 test through their GP? Is it even available on NHS. I requested homocysteine for that reason as that would be high if B12 not active. My Homocysteine is 8.2 still too high as should be ideally 7 but seems to imply B12 is active as had been nearly 10! Or I see you say have intrinsic factor tested - could I reasonably expect my GP to test intrinsic factor on symptoms? Is it one that they are often ok about? Especially as serum shows 400 and 500 and these last few days I have started supplementing again. My ferritin is high compared to my low useable serum iron, and transferrin saturation at only 18%. My Full Blood Count is normal except for borderline MCH and abnormal low MCHC for years. Would that be enough to warrant GP asking for Intrinsic factor. I saw the results of a study in Ireland published 3/12/16 where they state rather cavalierly. (I am sure will be relative risk but none the less) That a saturation % of 20 or less put you at 200% higher risk of heart attack.

    Thanks for the link. Sorry to be asking so many questions.

  • Welcome to the forum, LynneG.

    Burning mouth etc. and burning and tingling fingertips and toes are typically B12 deficiency symptoms, not hypothyroid. I would ask your GP to check B12 and folate levels. If you are B12 deficient your GP should check intrinsic factor in case pernicious anaemia (autoimmune) is causing deficiency. Post the results and ranges in a new question here or in healthunlocked.com/pasoc

    Low thyroid levels often cause a rise in cholesterol which drops when optimally treated. NHS doesn't usually diagnose hypothyroidism until TSH is over range or FT4 is below range. TSH fluctuates throughout the day which is why members are advised to have an early morning blood test when TSH is highest and to fast (water only) because TSH drops after eating and drinking.

    Ferritin is optimal around 100 to halfway through range. 140 for a post menopausal woman doesn't seem unduly high. CRP 1.9 is low and indicates you have cleared whatever inflammation was causing it to be higher.

    If you are reluctant to ask your GP to test you can order a private blood test. Blue Horizon Thyroid Plus 11 includes TSH, FT4, FT3, Thyroid Peroxidase antibodies, Thyroglobulin antibodies, CRP, ferritin, vitamin D, B12 and folate. thyroiduk.org.uk/tuk/testin...

  • oops, I thought the reply to you both would post below, please see above. May I also ask if anyone opts for private blood tests. Does the GP practice or hospital dept happily draw the blood and then give you to send off. If not how do they get blood drawn? Thanks again

  • LynneG,

    Serum B12 is the test ordered by GPs. Active B12 is available privately. I recommend you contact the PAS forum I linked to above as they are the experts when it comes to B12 deficiency and high homocysteine. I doubt your GP will agree to test intrinsic factor when serum B12 is within range.

    labtestsonline.org/understa... explains high and low values in full blood counts.

    GP practices are not likely to be happy to do blood draws for private tests. They, and hospital phlebotomy depts may agree to do so for a fee. Blue Horizon Thyroid Plus 11 can be done at home and doesn't require a phlebotomist. It involves pricking a finger and milking blood into a microtainer.

    I'm not knowledgeable about iron. I suggest you post your iron panel results and ranges in a new post and ask for advice.

  • Thanks Clutter for all info. Have just started checking PAS forum info thanks to you. Good to know about finger prick test. Have saved file for blood tests on line and will look at posting again re iron. All very overwhelming - I want to learn everything at once while time stands still!

    I have a friend of a friend who is a natural nutritional clinician who says i should ask my GP for a referral to a neurologist - do you think that is necessary if It seems maybe B12 deficiency?

    I was wondering if I could ask my GP for a B12 injection, stating just to see if relieves symptoms. What reaction do you think I will get? Or as anyone else tried that? So bypassing digestion influences. Altho I suppose it won't bypass the methyl pathway process. So are injections anymore effective really ?

  • LynneG,

    You don't know yet that you are B12 deficient so it's premature to ask for B12 injections or referrals to neurologists before you have a B12 blood test.

  • Thanks clutter - but I have these awful symptoms and i dont like to think of my brain being damaged/myelin.

    I have had serum B12 tests but high because supplementing.

    stopped supplementing and fell from 550 to 400 in 6months. I started supplementing when my serum B12 was 191 - yet I had a rich red meat diet.

    In addition NHS B12 will not show if B12 active in cells.

    So I had homocysteine tested so should show if B12 active - was nearly 10 far too high. It is till above 8, 6 months later with strategies

    Can a B12 injection harm?

    I was hoping an injection would show whether it was B12 if symptoms stopped or improved.

    Both my grandma and her son, my father had B12 injections. My grandma too late, as given when developed parkinsons and then later developed dementia. So my dad asked for B12 injections from age 60 which I think got him to 85 with perfect clarity. But he died of anaemia re destruction of red blood cells through mitral valve infection damage.

    I thought B12 was not retained re water soluble and so what would be the harm. With every real possibility of possibly helping and identifying an issue.

    What do the NHS expect you to do if do not provide relevant tests.

    One test B12 injection seems a testing option to me.

    Is there something I am missing/ that I don't undrstand

  • LynneG,

    I'm no expert on B12 deficiency which is why I suggested you contact the PAS forum for advice but I'm fairly sure the NHS won't prescribe injections when serum B12 is in range which is why so many people self inject.

    If NHS won't do the tests you require you can order them privately. Google "Active B12 test" to find out where to have it done or ask on PAS.

  • Yes, thank you for your help. I went on the PAS site last night (after googling what it meant lol.) have some videos to watch for info and then will post :)

  • Thanks so much for your information and links. Sorry I mentioned the iron again. I had thought there was a connection between iron and B12 but probably just confused :)

  • Hi cant help wondering if your burning mouth tounge feet and other symptoms could be attributed to Sjogrens syndrome. I am diagnosed with hypothyroidism and sjogrens syndrome. The burning mouth tounge feet are very much part of sjogrens symptoms. For me, the discomfort in the mouth was very hard to bear. Perhaps you could ask if a ro antibody is evident? Good luck.

  • I have looked up Sjogrens Syndrome. Thanks for info. Not sure have lack of saliva or tears. But good info to have. Can you tell me what R O antibody is - Thanks :)

  • Hi LyneG, I do not know what ro antibody stand for or indeed explains. it is only since coming to this site I learned to obtain a copy of my blood results. I now have a copy; will take to my next rheumatology consultation to discuss.

    I was diagnosed approximately May 2016, though consultant told me my notes suggest Sjogrens was evident in a blood test I had 10 yrs earlier.

    I was fortunate to be accepted on a research programme September 2016. Attending a Sjogrens specialist centre and undergoing a 3hr assessment with testing has now meant I have been put on a Sjogrens register. I have an outpatient appointment at the centre April 2017 and trust I will get good advice regarding a management plan for mouth care.

    I have also joined a support group online and will attend my first contact meeting in March. I will meet up with other people who live with Sjogrens syndrome and listen to professionals who have an interest in helping us manage the condition.

    I have a lot to learn. I am optimistic now as I no longer feel so alone.

    I hope you get some answers soon and thatvyou feel better.

  • Thank you. That sounds like good support and how healthcare should be. We need to feel no loss of control, have access to be able to learn and provision of info and research and feel supported by clinicians and share with others so we feel no longer alone. Mindset is everything. You sound as if you have struck gold. Hope so :)

  • I would echo Clutter's advice to visit the PAS forum, where you will see several pinned posts containing a lot of info. The burning mouth etc. is a giveaway for B12 deficiency, and the standard serum test is actually not very useful. Though you eat red meat etc., most B12D is caused by some form of malabsorption.

  • Thanks, will do. Like the giveaway comment - makes me feel more confident :)

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