Still no joy

I have just come back from an appointment with the endo. Basically, she is not prepared to do anything until my blood results go off the scale. I suppose I kind of knew that would happen. She did tell me something that I didn't know - that the surgery did test my antibodies and did get a result back showing positive. But then she said that it doesn't mean anything as peroxidase antibodies don't attack the thyroid, they just prove that my body is capable of making antibodies. So, basically, she said that I am a prime candidate for autoimmune diseases as I am already diagnosed Coeliac and I have tested positive for for thyroid peroxidase antibodies. I have been feeling like s**t for 18 months and have a list of symptoms as long as your arm BUT............they aren't going to do anything! She then sent me for blood tests - a repeat TFT, a test for diabetes and one for Addison's disease. To add insult to injury, the nurse couldn't get any blood out of either of my arms so I have got to wait and see the nurse at my own practice.

17 Replies

  • Could one of the more informed members help this young lady she is desperate for advice . I advised her to come here from another forum as she just isn't getting any help from the medics . Thank you in advance ! X

  • Thyroid peroxidase antibodies are used as a marker of autoimmune thyroid disease. This is because the enzyme Thyroid peroxidase usually only exists within the thyroid. If any is released by the thyroid, then Thyroid peroxidase antibodies rise in order to "clean it up". It is released by the thyroid when the thyroid is attacked by the immune system, when people undergo thyroid surgery or suffer a thyroid injury, and possibly in some other circumstances. Most often, presence of Thyroid peroxidase antibodies is used a an indicator of likely autoimmune attack.

    Thyroid hormone levels can appear "normal" for a long time after the start of the attack - sometimes many years. We see people who have been going through a bad time despite test results within the reference ranges.

    Do you have your test results? If so, please consider posting them (include reference ranges).

    It also strikes me that other issues also need to be considered - such as iron levels, B12, vitamin D - things we often say because they are so often found together.

    Before your next blood draw, there are some things that usually help the phlebotomist to get the blood out:

    Moderate exercise (a brisk walk - not even a long one).

    Make sure you are hydrated - don't go mad, but any amount of dehydration can make it more difficult.

    Warmth - make sure that you are comfortably warm, especially your arm.

  • Thank you. That is so much clearer than how the doctor explained it!

    I don't want to bore people with my results again but in short my TSH has gone from 2.33 to 3.81 in the last 10 months (range 0.2 - 4.5) and my T4 has gone from 12.8 to 10.9 (range 9.0 - 24.0). My Thyroid Peroxidase Antibody level was 160 (<70). The last results were from August so the doctor wanted them repeating today as she thought they might have changed over the last couple of months.

    The nurse couldn't get the blood as she said she was hitting scar tissue as I have had so much blood taken recently. I will definitely try all the above tips on Thursday though.

  • As I wrote, your blood test results might stay within range - but it certainly doesn't mean they are adequate. That TSH is too high and FT4 too low, in my opinion.

    It is often suggested that starting levothyroxine at a relatively early stage is appropriate. Certainly, there is absolutely no benefit I can see to being kept in a hypothyroid state for any time at all.

    Perhaps I should add that it is not at all unusual for thyroid hormone levels (and, consequently, TSH) to vary as autoimmune processes continue. People can go through hyper- AND hypo- phases prior to the eventual demise of their thyroid.

    ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I wish my endo shared your view. She has decided that I should indeed stay just as I am until my levels deteriorate further when she might consider medicating me.

  • If she could say: "If you delay treatment with levothyroxine then these are the advantages <list of advantages>" - maybe.

    From my own perspective, I must have slowly slid down the slope of hypothryodism (never getting as bad as many here), got diagnosed, then started levothyroxine. It is only now, several years later, that I can see more clearly the huge number of issues, many minor, that afflicted me. Dry hands. Scaly elbows. Eye issues. Plantar fasciitis. Impaired sleep.... Why on earth should you be kept hypothyroid and see your list of issues grow in length and severity?

  • I also have a growing list of issues that I believe are related but, as the doctor says, they could be related to other problems so we just go round in circles. Basically, I have no choice now but to wait for things to deteriorate further. I did ask her what I was supposed to do while I wait for my blood tests to reach the 'appropriate' level for treatment. She said take some time off work, stay at home and rest. I don't think she lives in the same world as me!!

  • In my humble opinion...

    Each day of hypothyroidism causes further damage. This damage is cumulative. Only some of this damage is reversible (hopefully, most of it). Therefore leaving someone unnecessarily hypothyroid is a BAD THING.

  • Chickenmitch, it is true that each and every individual hypo symptoms COULD be 'something else'. But when you have several of them the picture should become clearer to an intelligent doctor.

    What are the chances of having 10 different diseases, with one symptom each, rather than one disease with ten different symptoms? I think the law of averages answers that question, Don't you? It's just incredible how dumb they can be!

  • I am in awe of your knowledge . I have had it so easy the past twelve years that I have been on nature Throid whilst living in the USA .I am now having to resort to private and waiting for a new blood work as the one I had taken in August read as follows .

    Serum TSH 0.14miu/L(0.3-5.0). Below range

    Serum free T4 11pmol/L(9.0-25.0)

    Serum free T 3. 10.30pmol/L (3.5-6.5). Above range

    I do not really understand these results and the private Dr said the T3 was watpy to high . I could not understand this as I have been on the same 1.1/2 grain of nature Throid for years ! I then remember that the blood work was taken at 8 am fasting and I always take my meds at 7am every morning so. I believe that this is why the T3 is so high , I am waiting for the results from the new blood work to see if the levels have come down . Any advice would be appreciated as it has been a very stressful six month since my return and I need to inform myself of how I can best manage , thanks

  • Oliva1955,

    Honestly, there is no need for awe! Nothing special - just a lot of reading and some experience (but none of taking any form of desiccated thyroid).

    First thing in the morning is the best time for blood tests because that is when TSH is highest. (It actually usually peaks nearer midnight, but is lowest in the afternoon.) Given that so many people need to demonstrate the highest possible TSH in order to get diagnosed, or to get a dose increase, keep their current dose/avoid a dose decrease, stick with that time.

    (Even if you didn't need to convince a doctor, having all your blood tests over many years at the same time is sensible.)

    We usually suggest taking a daily dose after the blood draw. Which with your timings looks straightforward. Some people (me included) take their tablet(s) with them and swallow as they leave the blood test room.

    If you do take a dose just before a blood draw, you get exactly what you have posted. Probably between an hour and two hours will be the worst impact! And, as you have seen, doctors will immediately jump on the results.

    Advice: Delay taking your dose until after your blood draw. Keep reading (most subjects come up here in time). Post a brand new question when you get your results.

    ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Yes, how bad do you have to get before they will do anything? I spent two years getting nowhere with my docs and endo, trying all sorts of supplements, going through a myriad of tests for my symptoms as they were adamant it wasn't my thyroid that was the problem...well it was and I have resorted to self medication and private bloodtests. Still tinkering with doses but so, SO much better than I was. Looks like yours isn't even doing FT3 which really leaves you in the dark regarding what is happening with your thyroid.

    helvella is right, look at B12, Vit D, Folate and Ferritin, they are so important for good thyroid function, sorting them out improved my situation but then self medicating improved it more.

    I refused to wait to hit their 'magic' (made up) numbers, I can't imagine the state I would have been in had I done that!

  • I totally agree. I am fed up now of playing their 'game' though so I am going to try a different approach. There is absolutely nothing I can do if my blood test results are still not what they want so I need to do something positive or I will go completely mad. I have decided to try to look at the cause rather than the effects of my autoimmune problems. I am planning a massive detox next week and am going to look very carefully at what I eat after that. I may be completely wasting my time but I have to do something as none of the medics are giving me any help

  • Could I suggest that rather than a massive detox you eliminate one thing at a time? Slowly. And keeping a record of how you improve or not with each thing. That way you will be more likely to identify anything that is making you feel worse

  • That's probably far more sensible LizzieMaybe. I am just feeling so frustrated I want to do something drastic lol. I don't know if my patience will last long enough to do it slowly!! I suppose a good start might be to eliminate all the chocolate I have been eating lately!! ;)

  • Ooh that's very drastic! I've started with easing my way off gluten (which seems to help lots of folks on this forum). Lol, the first thing I looked up was which chocolate I can eat!

  • I am already gluten free (I'm Coeliac) so if you need any chocolate advice.......I was thinking of maybe going Paleo. The only problem is, I don't have much willpower. And I love chocolate. And crisps. And wine...........

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