Hypothyroid, low t4, low tsh, patronising endocrinologist!

[hairgirlork]

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.

[helvella]

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

[hairgirlork in reply to helvella]

Thankyou for that reply Rod, and the interesting link.

[RedApple]

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?

[hairgirlork in reply to RedApple]

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!

[RedApple in reply to RedApple]

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.

[Mrsmoon]

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

[hairgirlork in reply to Mrsmoon]

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

[sammistar]

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

[rosee in reply to sammistar]

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.

[hairgirlork in reply to sammistar]

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.

[RedApple in reply to sammistar]

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.

[blackqueen65 in reply to sammistar]

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

[idealkaty in reply to sammistar]

so I am curious as i also have hemachromotosis and my thyroid is all out of whack. I was on naturethyroid and Levothyroxine but all of a sudden have been having major issues. heart palpatations, shortness of breath just not feeling right so got blood tests done again to find out t4 and tsh low t3 normal range going to endo in nov. so are you saying your hemochromotisis had something to do with your thyroid issues? since then i have been told to go off levothyroxine and reduce nature thyroid which i do feel better about.

[smudgerthepainter]

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!

[hairgirlork in reply to smudgerthepainter]

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.

[FallenAngel]

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 .

[Danzo]

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

[Clutter in reply to Danzo]

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...

[Danzo in reply to Clutter]

Thank you Clutter 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

[Clutter in reply to Danzo]

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.

[alyshablack]

I am just joining and I see this is an older post but have you had any information on PCOS? The situation you described seemed very similar to mine for many years. Very thin, starving myself to be lean etc. My thyroids were lower for years as I starved but I dealt with immediate weight gain when I would try to eat normal, and I continuously dealt with extreme swelling and fluid retention. However the doctors said nothing was wrong with me. Over the years it was impossible to loose weight and the swelling of my face became worse and worse combined with extreme exhaustion, muscle, joint and tissue pain. My thyroid levels came to an all-time low as well as my TSH. My antibodies were fine. I continued to swell, gain weight, live in pain, and was overrun with exhaustion and allergy/asthma symptoms for years. I was quasi-diagnosed with Lyme disease, which I didn't have. Finally seeing a very qualified endocrinologist saved me. He checked my insulin levels which no one had bothered to do before inspite of my glucose numbers slowly rising. My insulin was very very high with only a slightly high blood glucose. However, I knew my blood glucose was uncharacteristicly high for me for years as it had always run low. So going up those 30 points didn't alert the doctors as it was then only slightly high between 110-120. There had to be a reason for this rise although no one had the sense to question it. They didn't question the continued dropping of my thyroid levels either, although I knew that wasn't normal. My endocrine doctor also considered a pituitary tumor or adreanal tumors which would indicate Cushings Syndrome. However, the blood results of the cortisol and adrenal tests were normal to only slightly elevated and pituitary MRI and adreanal gland ultra sound and CT scans were normal. He also did Testosterone tests. The Testosterone was very, very high. This indicated PCOS along with my other symptoms as I was also responding to Thyroid Meds at a much higher dose than previous doctors had prescribed. If you have a pituitary tumor, or Cushings Diease/Syndrome, my understanding is that your TSH, T-3 and T-4 will not respond to the medicine. So with high Testosterone, high insulin, negative pituitary tumor and adreanal tumor tests, slightly elevated Cortisol levels, low TSH, low T-3 and T-4 levels, weight gain, bloating, allergic reactions, severe facial and tissue swelling, water retention, extreme fatigue, heart racing, and pain, my diagnosis was Polycystic Ovarian Syndrome. Having had a partial hysterectomy many years before, I didn't have issues with infertility or irregular periods. I was also able to conceive three times at very young ages, all before I was 22 years old. Many doctors pick up on PCOS from infertility and irregular periods alone. I thought it worth telling you my story in the case you are still dealing with symptoms that are unresolved. Metformin, 2500 mg. a day along with Testosterone blocking meds like Spironaldactone, (also a fluid pill) twice daily, and Synthroid and other fluid pills helped me to lose the 60 pounds I had gained and keeps the swelling and bloating down. I dieted with a very healthy low carb low fat/healthy fat whole grain diet and drank a lot of water, kept the alcohol to a minimum and did quarterly blood tests to monitor where my body was metabolically. I lost the initial 20 plus pounds of fluid immediately. I was on Metformin XR at the time which did little for weight loss however. I was switched to the normal Metformin and began to loose weight instantly. In the beginning, up to five pounds a week. Then a continued two pounds a week for many months. I am now 131-135 pounds and for the first time in my life, I stay at a consistent weight without the ten pounds of fluid/weight gain in a weekend when I would just eat normal food. I would like to loose ten more pounds but I am very satisfied where I am and I am able to eat real healthy food and at least not gain. I am in my mid-forties and my figure is back. My biggest issue is allergic reactions, allergic asthma, and heart racing. I think the heart issues are a result of the PCOS going untreated for so many years. I recall the swelling began back in my mid 20's and I had very irregular periods in my teens. These things are indicators but were in no means enough of a warning sign to indicate PCOS all of those years ago. All people with PCOS are not overweight, in fact, I was very lean all of my life, although due to severe dietary restrictions as discussed earlier. We are all different and unique so our symptoms will most definitely differ which makes this interesting to discuss and all the more reason to share with one another. I hope my message finds you healthy and happy and I wish you continued success. If I can help anyone out with my story it will make this Disease a more worthy cross to bare.