Newbie - Graves Disease diagnosed In December. Blood test results and Parathyroid query?

Hello all. First post here, although I've been following posts for a few months. What a marvellous bunch of folk you are! Apologies for the length of my post, but I just wanted to give you lots of info..

I'm seeing my Endo every 6 weeks.

My free T4 was 45 in December TSH <0.01

Currently T4 is down to 10 but TSH still <0.01

(I don't have figures for T3 - should I?)

I'm on 25mg Carbimazole a day.

I'm vegetarian, and my white bood cell count was very low for a while (even before Carbimazole). Endo says that red blood cells 'nice and big' (?) so am not deficient.

Saw my doc again last week about recurring pins and needles (for a year off and on), and tremors which have returned again. She said that Calcium level is normal (adjusted) - 2.36, phophate normal - 1.38. But I'm worried as the healthcare assistant who took blood for my endo appointment on Monday said that my PTH was 4.3 in February. I looked online and information on Parathyroid Hormone level stated that it should be around 10??

A bit worried about everything now. I think that my endo is trying to 'kick start' TSH by lowering T4? Putting on weight and feeling rubbish for the last month or so..

Thanks in advance for any replies!

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  • Is it possible that when you looked up PHT levels online, that the article was using different units of measurement from those used by the person taking your blood?

    It can be measured in either pg/ml or pmol/L.

    The former range would be around 11 - 54, and the latter range around 1.2 - 5.8

    If your result of 4.3 related to the range 1.2 - 5.8 pmol/L it would seem to be within range rather than below.

    Just a suggestion.

  • Thanks Hypoteq. That's reassuring. x

  • It sounds to me as if they have got you on too much Carb, a T4 level of 10 is pretty low! They should be looking at the T3. It is absolutely vital that they do this. They are irresponsibly trying to control an overactive thyroid by looking at the TSH.

    When you have Graves' it will probably be suppressed for the rest of your life, unless the Graves' antibodies disappear. That is because the Graves' antibodies actually act directly on the pituitary, suppressing TSH production. That is why they often identify Graves' initially, but because of that, it is useless to tell them how your thyroid is doing. The T3 MUST be tested.

    I have had Graves' since the age of 13, I am 69 now, and although I had my thyroid removed at age 36 my TSH has never risen very much. the highest it has ever been was 1.4, and at that point I was severely hypothyroid with extremely obvious symptoms. In a normal person the TSH could have been as high as 100! yet because I have Graves' it didn't rise.

    I cannot understand why they should want to 'kickstart' the TSH because that would achieve nothing. Their obsession with the TSH level is unnecessary, they should be looking at your thyroid hormone level, especially the T3 with they appear to have overlooked, you really ought to ask them if they have tested it, and if not, why not.

    Marie XX

  • Thanks Marie. I really didn't know that Graves affected the pituitary too.. The endo said that she wouldn't do a retest on antibody level for a year. I thought they had been measuring T3 but don't have the results. I'll ask on Monday and repost if that's ok? What am I 'aiming for'?

  • I would think that somewhere in the 'normal' range would be very good. It would not want to be too low or too high.

  • Hi marie, I was reading with interest your reply to thistle about tsh .I have Graves diagnosed in jan this year(diagnosed hyperthyroid last nov)Am on block and replace t3, t4 in range but my tsh moved from below 0.01 when I started to 1 within a month of treatment. My endo said this was a promising sign.Do you agree and does this mean my Graves antibodies are dropping then? Never actually told what level they are at start just that they were positive. Thankyou for any advice/info...kim

  • Sorry meant to add I had thought as my tsh is moving up I could be taking too much carb or not enough levo? Still new to it all and get mixed up! The palpitations, anxiety, bowel problems have now cleared up just the sweating remains a problem .thankyou

  • Hi Blood tests for PTH is very precise.if calcium ABOVE normal range.Then you need an A.M test for calcium, PTH and vit D, done together. If all out of range, or 2 and the D high for you. Then you need a nuclear scan, large hospital and a CT for parathyroid and ultra sound for thyroid. A lot of docs do not understand this, it must be all 3 done A.M. The nuclear scan is a pest as some drugs preclude it, especially Amioderone and thyroid meds have to be stopped. If you have that make sure you ave this info.

    Best wishes,

    Jackie

  • Hi Jackie. Thanks. I think my calcium is normal? I don't have anything for vitamin D.

    A few other results but all meaningless to me, and appear to be within ranges. My neutrophil count was very low and red blood cell count (don't remember the numbers) was 'high, but not worryingly so'.

    The last blood test results were taken in the afternoon. The doc hadn't told me to have them done in the morning..

    Apologies, I'm confused and not really understanding your reply!

  • Hi A lot of gP`as or even various hospital docs do not understand about the bloods for pTH, I had to explain to 2 GP`s at my practice. I have an exceptional Endo.If calcium not over range, any tine it would be even PM, then PTH is fine.If calcium goes over ran ge then you need the proper blood tests. Are you sure you vit D, hormonal is OK.It makes such a difference in range.

    Do get back to me if not clear,but basically forget the PTH while calcium OK

    Jackie

  • Thanks Jackie.

    Much appreciated. I think the doc wanted to rule out problem with PTH because of my 'other' symptoms. She said if the PTH came back normal she would refer me to Neurologist. I now think that B12 should be looked into, then I may not need to see a neuro.

  • Hi, sounds like pou need to find a good Endo, then ask for a referral. All this is Endo.However, good a GP is thyroid disease is very complicated, Endo`s deal with all hormonal secretions etc all over the body so, have a very good and wide Knowledge Do make sure you have a Diabetes test too, very similar symptoms to start with, GP or endo.

    Best wishes,

    Jackie

  • hi Jackie

    Thanks for your reply. I do see an Endo regularly. She now knows I'm 'on the ball' about results etc. I had a test for Diabetes last year. That was fine.

    Best wishes

  • Good Luck.

    Jackie

  • Having red blood cells 'nice and big' (?) so am not deficient is a warning!

    Big red blood cells are a strong sign of low vitamin B12. Please do something about this. First get your actual blood test results. Alongside, ask your GP for a B12 test. And consider getting an Active B12 test - if I were you and could afford it (or live in the few places it is available on the NHS), I would get this done. If you are going to get a test, do NOT start supplementing until afterwards. Once you start taking it the results of tests are likely going to be very much less helpful.

    Information about B12 available here:

    b12d.org

    Charity supporting people with B12 Deficiency.

    pernicious-anaemia-society.org

    Charity that exists to provide Information, Help and Support to sufferers of Pernicious Anaemia and B12 Deficiency, their families and friends.

    b12deficiency.info

    An information hub site which brings together all the key sites for B12 deficiency.

    Be careful about comparing tests around the world. There are many possible reasons for variation, not least when the test is different or the units it is measured in are not the same.

    Rod

  • Back in 1962 a paper was published which identified low B12 as a possible cause of low parathyroid hormone:

    ncbi.nlm.nih.gov/pmc/articl...

    I doubt that out bodies have fundamentally changed in the 52 years since then. :-)

    And don't delay the B12 issue. Irreversible nerve damage will occur if low B12 is left untreated.

    Rod

  • Hi Rod. Thanks for your replies. I'll read through these.

    I do seem to remember the endo saying that the only way to improve B12 would be injections?

    I'm trying not to worry about this, but want to be a bit more empowered for my next appoinment. I've been a bit meek and grateful for anything when I've previously been to the endo, but I have been feeling worse over the last 6 weeks and have been off work again recently. My boss had been great about my previous phased return, but I think she's becoming increasingly annoyed.

  • If you are bad enough to need B12 injections, then you really need to have them and get started.

    Others here have far more knowledge and experience than do I.

    And kick-starting TSH? It is very well-known that TSH can remain suppressed for a long time after carbimazole and/or being hyperthyroid. That is, at least months. Keeping someone hypothyroid during that period seems to me to be poor management. You need that thyroid hormone regardless of TSH numbers.

    Rod

  • Thanks Rod.

    I'm going to go armed with some questions and facts from the websites which you kindly provided. Endo just mentioned B12 injections saying that I wouldn't want to go down that route. But having glanced through the B12 websites I'll be asking for more tests. I think I also want to decrease my carbimazole. (note to self : be strong!)

  • So far as I am aware, although injections can always be uncomfortable, most people who have low enough B12 to need them, cry out for them. I am struggling to find a reason "not to go down that route".

    Rod

  • Yes, Rod

    I took the little print off table from the website which you kindly recommended.

    I was armed and ready to demand a B12 test today, but Doc looked at my past results and admitted that I was low in December and should have been recalled (see below). Thanks so much again.

    I don't care that the injections will be uncomfortable at all. Just glad that this could sort things out and the I could go back to being 'me' again.

  • I have graves and B12d. The first thing you must do is get copies of all your test results including ranges, you defo look over medicated. They should be reducing you down to a maintenance dose based on the T4 not the TSH. Personally I needed to be above 16. Lots of things in your post suggest B12d, large RBCs (what kind of idiot doc says "nice and large" as though it's something to aspire to), low WBC, pins and needles and tremors. You need tests for B12 and folate for starters. On the last link Rod gave b12deficiency.info there's a page about what to do next? There are also some new UK guidelines for diagnosing B12d, I'll add the link later, on my phone at the mo. But to reiterate you must get that Carbi dose reduced they are keeping you hypo.

    H x

  • Thanks Hampster. I really appreciate that. I'm going to read these and make notes for my appointment. x

  • Assuming you are in the UK and going on the usual assays your Calcium and PTH are fine.

  • Thanks very much Hypohen. Yes, I live in Scotland.

  • Hello all.

    Thanks for your replies.

    I've not posted back as my mum has been undergoing surgery this week, and I have been caring for my father.

    Anyhow, I saw Endo on Monday and then my doc today.

    Results are:

    TSH <0.01 (ref 0.4 - 4.5)

    T4 10 (ref 9.00 - 25.00)

    T3 1.8 (ref 0.9 - 2.4)

    She says that she's happy with these levels but won't let me reduce Carb too fast - so on 20mg until I see her in 6 weeks

    When I saw another doc today (re - 'other symptoms' like pins and needles etc which Endo said were definitely not thyroid related). This Doc (tend to just take 'pot luck' with who you get at this practice) said that my B12 was low when tested in December and that I should have been followed up .. The B12 level at that time was 195 (his minimum on reference range was 180 and upper, I think was about 400? - don't know what the unit of measurement was). So another blood test next week and a re-referral to Neuro (doc said my symptoms are too extreme to be B12 related - but I'm now thinking everything points to this - maybe pernicious anaemia?).

    That would explain the 'nice and big' red blood cells then?

    I'm now disappointed with my previous consults with my doctors/ various doctors. How could they miss following up on recall for low B12? I thought they were really on the ball before (apart from the one who thought I may be hyper-ventialting which would explain parasthesia - utter tosh - I am definitely NOT hyper-ventilating!!!)

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