Hi im new to this site, i have had Graves disease for 10 years, 2 years ago had a total thyroidectomy, need help with blood results

Not having much luck with Endos, 1 month after surgery was put on 20mcg of Liothyronine and 150 mg levothyroxine as the endo said i was unable to convert T4. about 4 months ago a new endo took me off the T3 and reduced the T4 to 125mg. I did try telling him i felt very ill but he did not want to listen. i have contstant pain. 2 periods a month now (only since he reduced my meds) PMT that i have never experienced before, severe hair loss, severe constipation, Bloating stomach, Swallown hands and Face. Loss of feeling in arms and legs, Brain Fog (my husband is writing this with me lol) The pain/numbness in my hands wakes me up at night. My skin is so dry and Flakey. Also the weight gain all he says is i eat too much, I do NOT eat enough to put on any weight let alone 25kg. lots of other symptoms but brain not working today. I have a few blood results and would really appreciate any help you can give me.

TSH 1.12 0.25 -5.00

Free T4 23.6 9.0- 23.0

Thyroid Peroxidase Antibody 37 0.0-60.0

Tissue Transglutaminase IGA antibody 0.7 0.0-6.9

Vitamin B12 157 197-771

Serum Floate 2.2 4.6-18.7

Creatine Kinase 49 25-200

Lots of other results for full blood count, Liver, Bone,Lipid,Creatinine and Electrolytes but too much to type out. Thank you for reading this very long post

16 Replies

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  • How totally illogical to put you on loads of Levo if you cannot convert!!

    1)Your thyroid results are pretty meaningless because they haven't tested Free T3, and as soon as you introduce liothyronine TSH and FT4 are irrelevant. The effect of the T3 in suppressing TSH persists for a long, long time after you stop taking it. My TSH was still zero after two months of no T3 at all. You may or may not be able to persuade your GP to do the test, if you can't its worth having it done privately with a fingerprick test from Blue Horizon or Medichecks. And while you are at it, a reverse T3 test would be good to see if you are producing it from all that T4.

    B12 and Folate are both woefully under range, and plenty bad enough to cause symptoms not unlike hypo. Your doctor should test for pernicious anaemia, and give you B12 injections while you investigate dietary change if its relevant. He should also prescribe folic acid.

    When men gain weight rapidly they never get told they are eating too much, their symptoms are taken seriously!

    On a practical and hopeful note, once you know what is going on, you can, if necessary, self medicate. Its not ideal, but its a lot better than feeling the way you do now. Get your test done, post the results on here, and our collective wisdom will help you work out what you can do.

  • 'When men gain weight rapidly they never get told they are eating too much, their symptoms are taken seriously!'

    Not my partner. His bmi came up on the border of obese and his (male) gp said 'I hate when they say that, look at you, you're not obese. And with these results *I* would be obese!'

    Ha ha chortle etc, er, but yes, they are both obese. Or not, if you are a gp who would rather not be obese.

    Sorry for the diversion, if I didn't let it out somewhere I'd do myself an injury.

  • 'Normal' has changed though. We aren't used to seeing healthy slim people. You only have to look at a film from the fifties to see how our view of body shape has changed.

    My GP said the same thing, 'You don't have a problem with your weight' - I was about 25% overweight at the time.

  • That's fine for you and me to visually assess ourselves and others, I'm ok w not stigmatising heavier people (I'm not very slimline myself), but if you're a doctor who has the much-touted scientific info in front of you incl a chart on which my partner's info appears under 'borderline obese' then just stick to the facts.

    My fella also has knee pain and a problem w snoring, what shall we blame that on? He also had elevated liver enzymes which were laughed off.

    You and I can be forgiven using our eyes to decide if we are overweight, but the doctor gets paid to assess the actual tests against the actual evidence, not to just improvise.

    The outcome is that people who take their very real quality-of-life issues to the gp are misdirected either one way (we won't give you thyroid meds but you're obese and must eat less and exercise more) or another (don't worry about it, you're not obese).

  • I agree wholeheartedly.

    The word 'normal' comes from 'norm'. So if everyone is heavier, the norm has changed. It does not mean that suddenly being heavier is healthy. But of course GPs rarely see healthy slim people nowadays, so its kinda hard for them to know what it looks like.

  • But Ruthi my point is that he does know what the evidence shows him, that over a certain bmi (and I won't even get into whether or not bmi is the best gauge) is obese. That's why it is calibrated and recorded, so you know you aren't expected to make a personal judgement w your eyes. He is not expected to interpret the results any further than finding the corresponding info on the chart.

    Of course the (ahem, female) nurse had already taken my partner through his exam and written on the results 'borderline obese' so for no reason at all (except that the doctor doesn't like thinking of himself as obese) he chose to counter that factual info.

    There is an argument to be made that because they don't see a lot of slim people it should be very evident what it looks like, but in fact 35% of men and 42% of women are not overweight or obese so it is not like a needle in a haystack.

  • I'm sure someone will be able to give you good advice on here. It's clear you B12 and folate are far too low - did your dr not pick up on those results?

  • I am really very sorry that you have been catapulted into ill-health due to your Endocrinologist, wrongly (he might think he's correct) has reduced your thyroid hormones.

    We have all the sorry stories on this site, mainly because members are not treated optimally.

    New Research (from several research bodies) have stated that most get well with a combination of T3/T4.

    Endocrinologists appear to be the least knowledgeable when treating patients who have hypothyroidism but it is even worse, in my viewpoint, that they remove the vital T3 from a patient who has no thyroid gland whatsoever.

    Levothyroxine is T4. T4 is an inactive hormone and should convert to T3 but many of us cannot do so efficiently or the dose of levo is too low in order to keep our results 'within a range'. Liothyronine is T3. T3 is the only active hormone required in our receptor cells and it runs our whole metabolism. The brain contains the most receptor cells then heart but it is required from head to toe.

    You can source your own T3 at present as the NHS has cut back on prescribing for patients (even if the patients are unwell without it) as it has gone exhorbitanly expensive by the Pharmaceutical company - about tenfold in rise I believe.

    Members have had to source their own and they will send you a Private Message of where to source.

    Next your B12 is woeful. You have to get checked for Pernicious Anaemia and I'd get your GP to test your Free T3.

    We are better off 'Doing It Ourself' at least we know what makes us feel good. If we took too much of any thyroid hormones we'd soon reduce if we felt overdosed.

    Before blood tests and levothyroxine were introduced in the 60's we were diagnosed on our clinical symptom s alone and not dictated to by blood tests and were given a trial of NDT - natural dessicated thyroid hormones which was first taken in 1892 and thus saved the life of that patient as well as others up to the 60's when the 'new' method was introduced.

    You have to bring your B12 up to around 900 to 1,000 to prevent neurological damage and I'll give you a link. How doctors can ignore such a low result I don't know but most of them go by the 'range' if you are somewhere within that's fine to them whilst the patient deteriorates. Buy methylcobalamn B12 sublingual and most members source them from Amazon. I now don't buy Solgar as I found they didn't dissolve under tongue.

    You can improve your health but it does take time.

    You can get private blood tests (pin-prick from recommended labs) and the most important are Free T4 and Free T3 and I'll give you a link and you can see the reason why we have to know these.

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

    Doctors have absolutely no idea or Endocrinologists how unwell and desperate it is to be taking thyroid hormone replacements and feeling worse than before we were diagnosed (most likely).

    I am not medically qualified but had undiagnosed hypothyroidism for years but was diagnosed with other problems and had 'treatment' which was completely unnecessary.

    We are always wise after an 'event' but we can well do without events and the aim of thyroid hormone replacement is to alleviate ALL clinical symptoms not give us more.

  • Endo doesn't know anything as unexplained weight gain is one of the most common symptoms and maybe the first the patient is aware of. I'll give you a list and you can tick off the symptoms you have.

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

    So many patients are derided about the weight gain which cannot be helped at all until on an optimum dose of thyroid hormone replacement and levo alone doesn't help many patients as it cannot raise their metabolism high enough. Some patients don't get any sympathy from doctors/endos and are told to diet or that they eat too much etc etc (you've had first hand experience of that). Dieting isn't any good if hypo until all symptoms are resolved and patient feels back to normal.

    Take your own health into your own hands and many have been successful. I am fortunate I am well now.

    This is a link from a doctor who used to be an Adviser to Thyroiduk before his untimely death and he resigned his licences so that he could have freedome to treat his patients without interference from the associations. The first question will be of interest to you.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • I think the first question is me lol, i have been a vegetarian all my life, i was tube fed untill i was about 7 not all the time but the drs would put me in hospital and feed me via a tube because i wouldn't eat, i still don't, i don't really enjoy food, if i have 4 evening meals a week i have been very good. but when my Husband and my Mum told him this all he could say was "physics say's different". WHY do they all think we are just lying???. Thank you so much for your time and Knowedge it has been very helpfull. I will be back at the Dr's very soon armed with all of this Thankyou

  • So endo #1 knew you weren't converting and gave you some t3 (good) but also gave you the levo they knew you *could not convert* and endo #2 just would rather not know. I think this is a matter of either finding an explicitly good t3-friendly endo from the TUK list or diy.

    Sorry you're so unwell, it makes me cross to read these stories, they have no idea. x

  • Thank you Endo no 2 has no records from Endo no 1 as i have moved still in the same county. but must be too difficult to email notes over!

  • Can you go over to endo #1 and submit a written request for the records to be sent over, as well as asking for a letter re not converting? If you don't convert you will never be well on levo, it's like putting diesel in a petrol car.

  • Might be an idea to go over to the Pernicious Anaemia forum for advice :)

  • Which blood tests do i need to see if i have hashi's?

  • Antibody tests will tell you if you have Hashi's, and you will need tsh, t4 and t3 to tell you if you are hypo.

    To see if you're converting you need to have the t3 done, it is not optional.

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