Confused (again)

Hi everyone. I have just come back from the doctor. Two weeks ago I saw an endo about possible hypothyroidism/hashis and I went to the doctor to get results of MORE blood tests today. My TSH had been steadily rising throughout the year from 2.33 in January to 3.81 in August. My T4 was 12.8 in January and 10.9 in August. I have also had 2 positive antibody tests. In a nutshell, I have practically every symptom associated with UA thyroid from hairs loss to extreme fatigue. The doctor I saw today was really nice. He really listened and seemed to understand. HOWEVER, he did say he will leave the 'thyroid business' to the specialist although he told me that in the test I had done 10 days ago my TSH was 1.8. What's that all about? Even though he said he would leave the 'thyroid business' to the endo, he did say he will give me frequent blood tests between now and February (when I next see the endo) to keep an eye on things. Par for the course so far, as I am used to being passed from pillar to post. But then he said he thinks I might have CFS/ME. I wasn't really expecting that. He said he didn't want to make a diagnosis without my agreement so he has signed me off work for 2 weeks and asked me to read up on it and then go back to discuss further. I really don't know what to think now. Can anyone advise please?

13 Replies

  • Chickenmitch, Hashimoto's causes fluctuations in thyroid levels and the time of day you have the blood draw affects TSH which is highest early in the morning, and lowest during the afternoon. It's entirely likely that a blood draw at 8.00am will give a TSH 3.81 but a blood draw at 4pm may show TSH 1.8. See the graph in this link

    Arrange future blood draws early in the morning, and fast (water only), as TSH is lower post-prandially.

    Thyroid symptoms can present months/years before thyroid levels are abnormal enough for treatment. Hashimoto's will progressively damage your thyroid and cause hypothyroidism but NHS won't usually make a diagnosis until TSH is over range, or FT4 below range. There is no cure or treatment for Hashimoto's but 100% gluten-free diet may slow progression, reduce Hashi flares and antibodies, and improve symptoms.

    I had very debilitating symptoms when TPOab antibodies were elevated but thyroid levels were unequivocally normal. I was told symptoms were non-thyroidal but they resolved after thyroidectomy which convinced me my doctors were wrong and that Hashi's itself causes problems whatever thyroid levels are.

    Before you accept a diagnosis of CFS/ME read the links below and use the symptoms checker. It may be a folorn hope, but see whether you can persuade your GP or endo to prescribe a 3 month trial of Levothyroxine.


    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.

  • Thanks Clutter. i had the blood test done at 9:30 am and it was a fasting one as they were also checking for diabetes and Addison's. I am not ready to accept diagnosis of CFS/ME yet but just feel totally confused right now. All I know is that I don't feel right. I don't really care what the diagnosis is as long as someone does something to help me feel better. Surely if it was CFS/ME my hair wouldn't be falling out and my skin itchy and dry? I will read through the links. Thanks again, Clutter.

  • Yep.... Have a look at the work done by the late dr lowe.... He said cfs/ me was down to low t3.

    It is commonly thought that cfs / me were not around before the invention of the tsh test and synthetic meds.... If your thyroud is treated on symptoms then the other stuff doesnt arise.

    In your shoes i would give levothyroxine a try. Is your doctor prepared to allow you a trial to vet your tsh below 1 and see if it helps at all?

    G x

  • The problem I think I will face now is that I have recently seen an Endo who wants to wait and 'see how things go'. I might be wrong, but I don't imagine any GP will prescribe me levo now I'm under a specialist. Would you agree?

  • CFS/ME are real conditions, no doubt about that. However, before making such a diagnosis, all other possible causes of the symptoms should be ruled out, because the late Dr Lowe found that the vast majority of his fibromyalgia patients experienced huge improvement in their symptoms when thyroid issues were dealt with. The same has also been observed with CFS/ME, of course there are always some cases which do not respond to thyroid treatment, and those cases would need a different approach.

    It would be helpful if, in addition to the actual figures, you could also get the relevant laboratory ranges, as they do vary a little. These are the figures, usually in brackets, after the results.

    There is definitely a trend, of a slowly rising TSH and a falling T4 level, but what is more important is how you feel. If, as is possible, there is an autoimmune factor underlying the changes, then there is a likelihood that your TSH will fluctuate as the autoimmune antibodies destroy the thyroid cells and they release their load of T4. This will cause a temporary drop in the TSH which could fool the unaware medic into thinking that the gradual rise is just a 'glitch' and in fact you only had a temporary condition, which COULD be the case, in a few instances.

    I, personally would not be happy with a CFS/ME diagnosis, simply because it would put the thyroid on the back burner. Some people, however, would be quite happy with such a diagnosis because it tends to elicit more support from employers and the DWP! Thyroid issues, on the other hand, tend to get dismissed as an easy condition which can be 'cured' by one little pill a day.

    I would suggest that you raise the possiblility of having an antibody test, to see if there is, in fact, an autoimmune element in your illness.

    In the USA, a TSH of 3.81 would be considered definitely hypothyroid. Obviously, it would have to be over a series of blood tests. Do you have the test as early as possible in the morning? It can make all the difference as the variation is quite pronounced through the day.

    I do hope this is helpful.


  • Thanks for your reply, marram; it is very interesting and useful. I do have ranges for the tests.

    In January TSH was 2.33 (0.2 - 4.5) and T4 was 12.8 (9 - 24)

    In March TSH was 2.51 (0.2 - 4.5) and T4 was 11.4 (9 - 24)

    In August TSH was 3.81 (0.2 - 4.5) and T4 was 10.9 (9 - 24)

    I had a test about 10 days ago and the doctor told me TSh was 1.71 and I'm not sure about T4 but he said it was 'normal'. I have also had 2 anti-thyroidperoxidase tests. The first one showed a level of 234.2 (<34) and the second one was in the hundreds but I can't remember exactly.

    I am already diagnosed Coeliac, so therefore already following a gluten-free diet. When I saw the endo 2 weeks ago, she told me that, looking back through my medical history, several things I had suffered in the past were likely to be due to autoimmune reasons and she said that I have 'markers' in my blood suggesting that I am susceptible to autoimmune problems and that I should expect more in the future. That said, she refused to accept that I had an autoimmune thyroid condition and instead tested me for diabetes and Addison's. Now that my TSH has dropped again I feel that I will be totally ignored next time I see her and told everything is normal.

    When you say you would suggest an antibody test, do you mean thyroidperoxidase test?

    Thank you so much for your reply xx

  • Hi

    I have had a underactive thyroid for 12 years, last two years have been constantly returning to GP feeling tired ,swollen lymph glands .Brain fog have been offered everyone under the sun but what I need. In their desperation diagnosed with CFS/ME. icing on the cake was theirs no treatment where I live. Seen every GP in practice come out with comments like you have CFS sorry you feel so bad can we suggest antidepressants. Or GPs that do not believe in CFS challenging me on how I was diagnosed my reply was you know their is no tests that will give a diagnosed its just ruling out other illnesses.

    I was off work for 6 weeks and in that time diagnoses myself with Polymyalgia Rheumatic which does cause chronic fatigue .Eventually GP agreed and started treatment I was so angry I challenged him why he had not picked it up himself .

    Good news is he increased my Levothyroxine from 125 to 150, I feel much better not 100% but cant expect to with PMR. After 4 Months off sick I returned to work last week on a staggered return to work .

    Please don't settle for diagnoses of CFS /ME I am not saying it does not exist as lots of people do suffer badly from it .But just be aware you don't get fobbed of with it as I did .

    As for telling you to read up on it GP usually don't want you to know too much about your illness .Their are lots of scary stuff on the internet but just remember we are all individuals and no two cases are the same.

    Best Wishes


  • Thanks Rose. That makes a lot of sense. The more I think about it the more I am convinced that I do not have CFS/ME. I think I am going to go ahead with my original plan which was to change practices - I have lost all faith in the doctors at my current surgery. I am going to do what has been suggested to me and ask for a trial of levothyroxine. Unfortunately I don't think any GP will agree at the moment as I am now under an endo who wants to 'wait and see'

  • Saying he 'thinks you might have CFS/ME' is just doctor-speak for 'I have no idea what's wrong with you, because I didn't do it in med school, but this is a handy 'diagnosis' that covers my back'.

    CFS is a syndrome. A syndrome is a bunch of symptoms. Symptoms have to be caused by something. You have high antibodies. High antibodies mean you have Hashi's, no matter what doctors like to pretend. Hashi's can cause symptoms even when the thyroid bloods are perfect - which yours aren't. Antibodies can cause the TSH to vary, it really is a very unreliable test because so many things can effect it. But, a TSH of more than 3 means you are hypo.

    Put all that together, and I think you will see that the Hashi's/hypo is causing your CFS symptoms. And if they won't accept that, and still want to give you a 'diagnosis' of CFS, ask them to check your cortisol (24 hours saliva test, not a test for Addison's which is bound to come back negative) and nutritional deficiencies. And that's just for starters. See how they like that!

    Your TSH is - over-all - going up and your FT4 going down. It doesn't matter that it is 'in range', the point is where in the range it falls. You have symptoms. They are just beating about the bush, delaying the moment when they have to start treatment. Why they do that is anybody's guess. Tell your endo to get her head out of the sand and stop dithering. You have Hashi's and you are hypo. I just do not see how she can justify denying it.

    But, unless you can start throwing your weight around and telling them what's what, the only thing I can suggest you do is try self-treating - or threaten to start self-treating. See what they say to that.

  • Funnily enough greygoose I did threaten that at my endo appointment. When she told me she wanted to wait another 3 months I said that she was leaving me with no choice but to buy something off the internet and self-medicate. She said she wouldn't suggest I do that as I would have no idea what I was getting. To which I replied that at least I'd be getting something which is more than I was getting from her! She turned away from me and started tapping away at her computer then and barely spoke to me for the next few minutes. I don't think she liked me lol

  • I Don't suppose you liked her, either! lol They cannot bear it when you usurp their authority! Makes them feel insecure. lol But, it didn't have any effect, then?

  • No, sadly. And no I didn't like her lol.

  • OK, well, back to the drawing board!

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