Hypothyroid, low t4, low tsh, patronising endocrinologist!

I was diagnosed as hypothyroid 3 years, or so, ago. At that time I was suffering with anorexia. I have since recovered completely from anorexia (physically and psychologically), with a current bmi of 25.5.

2 years ago, my g.p. noticed both my t4 and tsh were low. I was referred to an endocrinologist, who took me off of thyroxine. I stayed off it for 6 months, or so, but became symtomatic quite quickly.

Many times I was told by g.p.'s that "thyroid is not the problem!"..."it must be a mental health issue", etc. However, a locum g.p. looked at my t3, t4, and tsh, revealing that my t4 AND tsh were BOTH low, so I was put back on thyroxine.

I have been back on 125mg for around 6 months, and I feel much better. Also, I have regular (as clockwork) menses for the first time in a-g-e-s! (My bmi has been this high for over a year)

However (I am getting to a point!), the endocrinologist I saw previously has written to me saying "...I understand you have restarted thyroxine, although again there was very little evidence of significant hypothyroidism in the pre treatment blood test. Just to be on the safe side I think we should do a scan of your piuitary gland to make sure nothing is a miss..."

Firstly, I feel this letter is worded a bit patronisingly, also, I'm terrified he's going to take me off of thyroxine again, and I'll lose my life to the fatigue again!

What does this all mean, and what should my course of action be?

Many thanks for reading all this. :)

19 Replies

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  • The endo might be patronising, but I concur with checking your pituitary. That is the standard approach and for good reason.

    He might also do tests for Follicle Stimulating Hormone, Growth Hormone, Prolactin and other hormones - all of which are produced in the pituitary.

    See this article for a brief introduction to what he is looking for:

    en.wikipedia.org/wiki/Hypop...

    Rod

  • Thankyou for that reply Rod, and the interesting link. :)

  • If you're feeling so much better on thyroxine, then I totally understand your being terrified it will be taken away.

    The thing is that whilst a low T4 reading might suggest hypothyroidism, a low TSH does not. Since most medics prefer to use the TSH number for diagnosis and treatment, the endo is not wrong to query your need for treatment. Sometimes the pituitary (which is responsible for the TSH number) is the cause of a false TSH reading. He would not be doing his job if he didn't check for possible causes of your abnormal readings.

    Do you know if you've ever had thyroid antibody test to see if your thyroid problem has an autoimmune cause?

  • Redapple, thankyou for your reply, and for understanding. I think I did have a test for antibodies, and it came back fine as far as I understand. I will see the endo, but I would like to be "armed" with a bit of knowledge too!

  • Ah a negative antibody test will also be adding to the confusion for the medics, since it's a relatively small number of people that are hypo without autoimmune cause. Likewise the anorexia (I relate to that). Weight loss with hypo goes against the norm, and I'm quite sure it's one of the reasons why my thyroid problem went unnoticed too.

    Fingers crossed they mange to make some sense of things and let you carry on with the medication you so obviously need.

  • i have heard of other people with similar differing readings to yours who ARE hypo. Stick with it. If endo no support I can recommend a gd one. Gd luck x

  • Thankyou Mrsmoon, it means alot to me just not to feel alone. :)

  • Hello,

    Firstly, congratulations on recovering from anorexia!

    Now down to the thyroid issue. I have had similar problems with my hypothyroidism. My readings were weird too - TSH, T4 and T3 all low. I was diagnosed with hypothyroidism about 5 or 6 years ago but over the last year I've been feeling pretty bad and symptomatic but every time I went to GP they just told me that my TSH was suppressed and wanted to reduce my thyroxine (was on 125mcg then dropped to 100 mcg then I think they wanted to possibly drop it again). When they were talking about dropping again I said how bad I was feeling and they tested for T4 and T3 levels which were both at the lowest end of the normal range. I think the GP was going to leave it at that but I said again how symptomatic I'd been feeling and he referred me to an endo. Endo did various tests that took about 6 months overall as I'd have one test, go back for the results then he'd send me for another. And I hate the experience I've had with doctors regarding my health, believe me, I would love to never have to see a doctor again. BUT. the endo is right. It is strongly advisable to get a pituitary scan. I have had one of these and it should be done with readings that are low for TSH, T4 and T3 (amongst other things). The readings could indicate that you have got secondary hypothyroidism which is actually a problem with your pituitary gland, not necessarily with your thyroid itself. Basically (I am no expert) it is when there may be some damage to your pituitary gland and it can't produce the right quantities of TSH. If there is not enough TSH, your thyroid won't receive the right 'message' and won't produce enough thyroid hormone. Sorry for my layman's terms but it is how I think of it!

    So although you are scared about being taken off thyroxine or having it reduced, I would still go and see the endo and get the tests done. And as helvella said, they will probably do growth hormone tests etc. that may reveal another problem. Endo actually discovered that I have a genetic blood disorder (genetic haemochromatosis) that I would never have known about if I hadn't gone to see him. I would suggest trying not to worry about what they'll say about your treatment until you get those tests out of the way. Cross that bridge when you come to it, although I know that is easier said than done, especially when you are feeling lousy.

    Good luck and keep us posted :-)

  • If the endo does try and reduce your dose or you're not happy with his advice you can insist on a referral to another hospital for a second opinion.

  • Sammistar and Rosee, Thankyou!

    Sammi, your explanations and understanding are fantastic, and much appreciated.

    Rosee, I think I would absolutly ask for a second opinion if the endo comes out with any of that "...history of mental illness..." stuff again, instead of helping me promptly.

  • hairgirlork, I also relate to the inappropriate 'mental illness' label. I absolutely know without any doubt that mine was caused by thyroid issues. As soon as my thyroid hormone level drops too low, I start to head right back there. I finally convinced my GP to actually take the 'depression' diagnosis off my records because I was so fed up with it being dragged up by every medic I ever see.

  • Hi Sammistar, I've just read your post with interest as I have recently had what appear to me to be odd blood test results. I've been hypothyroid for 14 years and in the last year started to be really ill. My blood results in January came out at

    TSH 0.02

    Free T4 16.8 (11 - 23)

    Free T3 4.2 (3.9 - 6.3)

    The doctor reduced my levothyroxine from 125mcg to 100mcg and re tested after a month

    TSH 0.04

    Free T4 15.5

    Free T3 4.1 The doctors receptionist called to say I had to carry on with the reduced dose until May and then get another test but I've made an appointment as I'm feeling worse and worse daily. Do these results look similar to how yours were when the endo tested your pituitary? Did the endo say the haemochromatosis was the cause of your odd test results? Any help would be appreciated as I feel the test results aren't normal but the doctor just want's the TSH to come up and doesn't seem to find the lower T4 and T3 to be significant.

    Many Thanks Shaz

  • Get your iron and particularly ferritin levels checked out. low ferritin (less than 50) requires supplementation. symptoms of low iron mimic those of a low thyroid. Low t3 and t4 can suggest low iron levels. T3 (rather than t4 whch needs converting to t3 before it can be used) may be more benefitial than t4.

    As for the "mental health" issues I think its a phrase they trot out when they dont know what to do! Every time, regular as clockwork my dose is reduced ( to improve the tsh number) my t4/t3 levels drop I slde into chronic depression. The GP and endo both state it must be due to external influences and would I like some anti depressants? NO just give me T3 for the depression(it vanishes within a couple of days of starting t3 and does not reappear) and get my t4 up!

  • Thanks Smudger! I have had my ferritin checked recently, as this used to be an issue when I was underweight. But it is normal now.

    And I'm very grateful to you for sharing your experience regarding gp's and their complete lack of understanding when it comes to depression! It's good not to feel alone there.

    Hopefully I will get along with the endo this time, armed to the teeth with knowlege. ;)

  • I had an MRI scan a few weeks ago on my pituitary ,,, my thyroid issues come from my pituitary not my thyroid . Always best to get it checked out .

  • If the PITUITARY gland is the problem, then what drugs or procedures are done to go about fixing it?

  • Danzo, this is a very old thread. You'll get more responses if you ask your own question. Provide some background and recent thyroid blood results with lab ref ranges and members will respond.

    If pituitary dysfunction is the cause of hypothyroidism the treatment is Levothyroxine for the hypothyroidism and possibly removal of pituitary tumours which are usually benign.

    patient.co.uk/doctor/hypopi...

  • Thank you Clutter :D You see, my experience on the internet is that if i ask a question, they always say

    1. Why didnt you google it?

    2. if you searched here, you would have found your answer

    99.9% of the time they hate me making new threads, and then I have to go somewhere else.

    But ok, I will make a new thread

  • Danzo, I've use fora where members are expected to search the archive to find an answer to their query before posting a question but it isn't like that here. Asking your own question will enable more people to see it and respond if they are able to help.

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