Strange reading TSH 8.7 T4 21.8 - confused!

Hi all, I'm a newbie here. Hoping you can help. My Mum has suffered from a thyroid issue for 20+ years, first with hyper and then about 4 years ago had Radio Iodine with subsequent total ablation. She's suffered on and off with issues getting her levels right since (in the meantime she had a mastectomy due to ductal carcinoma in situ) Anyway about a year ago she suffered a slight slip on a floor - didn't fall over but was enough to cause an injury to her back. Since then she had been in constant pain, Shes had MRI and Bone density scans - conclusion was an old fracture at l1 and another issue at l5. We have come a full year and she is still in agony despite epidural steroid injections, chiropractic treatment and physio. Just recently things have gone up a notch as she is back on morphine and numerous other painkillers. My question is over the thyroid. It seems to me that the one thing which has remained the same is that the thyroid tests have been odd...with the exception of one which coincided with a better period for her around christmas. The tsh is 8.7 but it seems the t 4 is there at 21.8. Shes been on 100 thyroxine (5 days) 125 (2 days) but about 4 weeks ago they altered her to 125 7 days a week. The endocrinologist is suggesting that Omeprazole (a drug to protect the stomach) should be taken separately and to retest in a five weeks.. My fear is my mum is going to go crazy before then. Pain so intense she describes it on the scale of 10 and now she is blaming herself for mistreating her back by going to the for so long. Should I be pushing for further tests to be done before the 5 weeks? As far as I know they have only gone on nhs standard tsh t4 tests to diagnose. No one is questioning this odd reading and the possibility it may be connected with her intense pains and muscle weaknees. My concern is her mental health. Would a conversion problem cause burning and intense pain/disability and anxiety. Any advice would be very welcome.

17 Replies

  • Omeprazole can cause poor absorption of levothyroxine but the fT4 21.8 suggests it is being absorbed. I can see two possibilities:-

    1. She is sometimes forgetting to take the levothyroxine, or sometimes taking it with the Omeprazole and sometimes not. This could mess up the TSH, fT4 figures.

    2. She may have a problem converting the T4 to the active hormone T3. Since the pituitary relies upon this conversion this would be reflected in a higher TSH than expected, as we see here. The endocrinologist should consider this an measure fT3 as well as fT4 and TSH. In fact I'm not very impressed they haven't done this. This poor conversion, if it exists, could be due to low selenium levels. I wouldn't try supplementing with selenium until they have measured fT3. Insist on it.

    Why is she on Omeprazole? If it's due to reflux or oesophagitis this is another symptom of hypothyroidism.

  • Hi there, The omeprazole is for all the painkillers and other drugs she is having to take due to extreme muscle pain and stiffness. I am almost certain it has something to do with this conversion issue. She is fab at taking her levo so I am sure that's fine - the omeprazole has been an on off thing and not constant depending on how many tabs she is taking which are hard on the stomach. I am not impressed with the consultant not doing more tests. She's had a full blood count but I only have two low readings which I managed to note down before handing them over to the dr! serum sodium 129 (136-145) and lymphocyte count 0.4 (1.0-4.0). Would selinium be something which would show on a FBC? Would a low T3 cause muscle pains and deteriation in mindset do you think? I thin the mind issue could be down to the extreme unexplained pain though. Any advice is very welcome!

  • Jcoop, low T3 can cause muscle pain and depression which is why your endo should have tested it. High doses of T3 have been prescribed for bipolar disorder and refractory depression in patients who don't have thyroid disease.

  • J, I would ask the doctor to put her on straight T3. I do believe it has an impact on muscles. So does magnesium. When T4 doesn't convert to T3, it can float in the bloodstream for a while or it may become reverse T3 which blocks receptors for T3.

    She is in a bad predicament and if doctors refuse to assist, I would consider finding a source of T3.

  • If it has been 4 weeks since she changed her levothyroxine dose then enough time has passed to do another blood test. Re your reference to another blood test in 5 weeks, is that 5 weeks from now, or next week? If next week I'd wait and insist they check fT3 also. You're seeing the endocrinologist privately, if it's being paid for by insurance I'd ask that he checks rT3 also. The rT3 figure is difficult to interpret and a relatively expensive assay. Essentially, if there is a conversion problem if will show up as highish TSH, high fT4, low fT3 (fT3 will be a bit low anyway as she is taking levothyroxine) and a high rT3.

    If the next blood test is in 5 weeks time and you live near London and can afford it I'd recommend you get a test done here

    This will cost £90, remember to enter the "junemed" voucher code.

    Low T3 (or any form on hypothyroidism) can cause muscle pains, as can poor sleep, which of course is caused by pain - a vicious circle.

    I don't think she is having any substantial levothyroxine absorption problems as the fT4 figure is about what you would expect for the dose she is taking. I wouldn't alter any medication until you have the blood test results and have seen the endocrinologist.

  • Thanks to everyone who has replied so far! I am now more convinced than ever that my Mothers suffering is something to do with the conversion of T4 into T3! I am still wondering which way to turn. I have emailed Louise and await a reply. The trouble is I fear for my Mum's mind now as she is so anxious and convinced her year spent going to the chiro has done her permanent damage...the last visit she experienced searing pain and hasn't been back since. We have ordered a new MRI scan just incase but I think they thyroid needs sorting too as this is where the root of the cause lies. The blood tests ordered by her endo to check if changing the time of taking omeprazole makes any difference will be due in another 3 weeks - we cannot wait this long!! I am thinking that by his comments at the last meeting he is not going to support any theories about it being connected to the thyroid anyway. We need an understanding doctor nearby as my Mum is so weak she wont be able to travel far. Thanks all so far - a great help!!

  • Welcome to the forum, Jcoop.

    Your mother's TSH 8.7 is high, particularly as she was on 100+mcg thyroxine. Her FT4 21.8 is within ranges 10-22 and 12-24 that I've seen and isn't concerning but rather good in light of her elevated TSH. There's no point in bringing forward the next thyroid bloods test as it takes 4/6 weeks for the increased dose of Levothyroxine to be absorbed and act upon TSH. She may need a further increase if her TSH remains elevated. You can ask the endo to test her FT3 and consider adding in some Liothyronine (T3) if it is low.

    I very much doubt the intense pain your mother is experiencing is due to thyroidal issues. It's more likely that the morphine and other pain killers have prevented absorption of her Levothyroxine which should be taken at least two hours away from other medication and 4 hours away from calcium and iron.

    If it hasn't already been done you should ask for ferritin, vitaminD, B12 and folate to be tested. Low and deficient levels can cause pain, fatigue, low mood but I doubt they would cause the intense pain you describe.

    Hypothyroid patients often have low stomach acid and Omeprazole is a proton pump inhibitor (PPI) prescribed to protect the stomach from high acid. PPI's block acid from forming and eventually make breakdown and absorption of nutrients impossible, resulting in B12 deficiency. Betaine Pepsin is a better alternative for low acid.

    I hope your poor mum's health improves soon.

  • Hi Clutter, Thanks for your reply. I doubt the morphine is the cause as this has been a recent thing due to the elevation in pain etc. It's so frustrating when you go to a consultant and they suggest one thing

    (change the time you take omeprasole and retest in 5 weeks). I cannot understand why they do not do the standard tests to rule anything else out (we are seeing him privately too!) I have emailed to say we would like any other tests available but he is on a very long holiday so we are stuck and I have a mother who is rapidly going crazy!!

  • email for a list of endos and private GPs if you want to see someone before your endo is available. Perhaps your mother should be referred to a pain management clinic too.

  • Back pain is soul destroying in itself so I can understand why your mum is so distraught. I never found epidurals to be of any help. Chiropractic was helpful sometimes. Amitriptyline is given for intractable back pain and is usually pretty good, also Diazepam, as it relaxes muscle spasm. Has she been referred to a Pain Clinic? Clemmie

  • Hi Barrister, My Mum has been to a chiropractor for the past year - first it worked then the burning pain etc came back. She has spent a fortune on it and the last visit frightened her as the chiro made a move which left her in agony. since then she is convinced she has been left disabled - she's still able to walk but is very weak and cannot stand for long. No amount of painkiller seems to touch her pain. she's on the list for pain management..but shes had an injection last year which didnt do anything. I still have the opinion that the thyroid is something to do with it - this high tsh has been around for some time and the GPs have been messing with doses for ages now.

  • I have read all the posts and honestly think your mother would be better with NDT but you may have to buy it yourself. I had TT several years ago and tried every combo of meds. Recently moved to NDT (armour) and am beginning to feel so much better. I had hip, groin pain that stopped me walking and was constantly seeing a chiro. I also have a hip bursa, which is slowly improving, so sitting down is now not such agony. Failing getting NDT, ask for T3 as others have advised but long term, she is definitely better with something that gives her all that she is missing by having no thyroid. I hope she gets help soon. x

  • This is a link re stomach acid especially when hypo and our metabolism slows down and thus don't produce enough stomach acid. The symptoms are the same as high acid so doctor get confused and also are unaware we are usually low acid.

    I wonder if levothyroxine isn't relieving her pain as that's when I had the worst pain joint/muscle- when on levo.

    These are two excerpts (one from the question and one part answer) and as your mother's TSH is high that may also be the cause of muscle/pain:-

    1.I have most of the symptoms of hypothyroidism, but the worst is my muscle weakness and pain. My doctor says my TSH is "high-normal." Because of that, he says my symptoms can’t be caused by hypothyroidism and he refuses to prescribe thyroid hormone. Instead, he diagnosed me with "fibromyalgia" and referred me to a rheumatologist who confirmed that diagnosis. The rheumatologist gave me an antidepressant and ibuprofen. These haven’t helped at all. Both my doctor and the rheumatologist said my muscle symptoms can't be caused by hypothyroidism.

    2.Dr. Lowe: You’re right and your doctors are wrong: Muscle problems are common among patients with untreated hypothyroidism. (They're also common among patients with untreated thyroid hormone resistance.) The most common muscle problems are weakness and excess muscle tension. The muscle tension often activates trigger points that refer pain. In the most severe and rare form of muscle involvement, called "Hoffman’s Syndrome," muscles become enlarged and stiff.

    According to what you say, you've long suffered from fibromyalgia symptoms that are also classic hypothyroid symptoms, and you’ve informed your doctor of this. Yet he refuses to permit you to undergo a trial of thyroid hormone therapy solely because your TSH level is within the reference range (formerly called the "range of normal"). In this respect, he practices as an extremist medical technocrat. Unless he revises his belief concerning who might and might not benefit from the use of thyroid hormone, you're likely to remain ill—that is, unless you find another doctor with a balanced approach to evaluating patients’ treatment needs.

    As stated above, if levo doesn't convert to sufficient T3 which is need in all our cells we don't feel well at all.

  • When your mother was diagnosed as hyperthyroid did her symptoms support this diagnosis or did she have any hypothyroid symptoms? This information could throw light on her current condition.

  • when she was diagnosed over 20 years ago she was typically hyper as far as we can remember - loss of weight, shaky and over anxious. What are your thoughts?

  • It was just that I have come across people with high T4 and T3 who have hypothyroid symptoms (due to thyroid hormone resistance). It is not uncommon for doctors to disregard the symptoms and treat for hyper. These people need actually need even higher levels of thyroid hormones.

    I don't think that this applies to your mother. A couple of points for consideration:

    If she took her T4 close to her blood test, that could account for the high reading.

    125 mcg is not a high dose of thyroxine and it could be worth trying a higher dose. The symptoms, including basal temperature, should be the main guide on the correct dose.

  • An update to my Mum's situation. Due to the extreme pain she is in she had a lumbar vertebrae xray - it's just come back with mild compression fractures of the lumbar vertabrae with exception of l5 consisitent with osteoporosis. This is concrning as ony last year she had extensive tests done including bone density and MRIs and had no fractures (apart from an old wedge fracture she knew about). Now this makes me's either something sinister (dont want to even think about it) or the lack of T3 thyroid issues have brought on the bone thinning. Any thoughts anyone? I'm awaiting a call back from GP now.

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