My visit to the Endocrinologist

Hi everyone,

Just to feedback from today. I had to have ECG as first appointment. Weight BP taken. He looked at my results and said that autoimmune thyroid disorder diagnosed in 2011. When I explained what keeps happenning he hinted at a theory that perhaps I have a mental illness which had been masked by my underactive thyroid. My thyroid is still underactive TSH usually around 5 and he did a test on my ankle which also showed that it was still underactive. Whenever I increase my dose I start to get racing thoughts, anxiety and other such symptoms associated with Bipolar. He suggested raising T4 and then treating the anxiety pharmaceutically. I said No I don't want the side effects of those and I'm not convinced there is a mental health issue underlying. Though I am prepared to process it and reseacrh if this might be true. He also wondered that I have just lived so long with untreated underactive thyroid that I am just struggling too much with the speeding up which is what T4 basically does. I have agreed to up to 75 on an extra day of the week. (curently on 50mg 6 days and 75 1 day - I can just about manage my job energy wise on that. I told him that the winters are really tough and he wondered if I have Seasonal Affective disorder. I begun to take Vit D3 in february to see if this helps for next winter. I asked him about NDT. He said that using this and people talking about this as a viable option is b######cks. That the concentration of thyoxine in any dose cannot be ascertained properly. I told him I had heard of people's experiences that they had felt better on it. He said these are anecdotal. I am going to go back in 6 weeks. I am happy that he is requesting blood tests to have a look at everything FT4 FT3 etc. So that is really good. he says that sometimes people need T3 but that he thinks my symptoms don't suggest it. Sorry its so long but i said i would share after my visit.

24 Replies

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  • Hi Karun, the same run-around many people get here. Oddly, this article was posted which I thought was excellent regarding T3. It also pertains to weightloss but interesting they are now using T3 to treat bipolar. Maybe you should go along with that diagnosis:) progressivehealth.com/using...

  • Thanks I'll check it out. Really interesting I never heard that before.

  • Karunablue, Large doses of Levothyroxine (T4) and Liothyronine (T3) are used to treat refractory depression and bipolar in people with and without thyroid illness. I've never heard suggested that raising a replacement dose can reveal hitherto undiagnosed mental illness.

    His suggestion that you have been depleted of thyroid hormone for so long that you are struggling to cope with it now is rather unusual too. It's a pity he didn't suggest an adrenal stress index profile. If your adrenals aren't working properly you will struggle to tolerate thyroid replacement including T3 and NDT.

    His opinion about NDT is the usual ignorant and prejudiced bovine splatterance we've come to expect from doctors who can't see beyond the drug company propaganda.

  • Totally agree. I wonder why someone saying they feel good on NDT is merely "anecdotal" but if the same person said they felt well on Levo it would be considered an absolute truth.

  • Is there any evidence for NDT Hennerton?

  • There is quite a reputable article comparing NDT with T4, hopefully this link will work! ncbi.nlm.nih.gov/pubmed/235...

    My endo was persuaded by it.

  • Thankyou lisabax

  • No, only decades of happy healthy people before Levo was introduced, as far as I know. Of course patients were dosed by symptoms and not TSH and so Levo might work well for most people if only they were given enough of it. Nevertheless, for anyone without a thyroid, NDT, which contains all the elements they have lost and not just T4, must be better and the anecdotal evidence is there for me to see in my own case. I started NDT about six weeks ago, after a merry go round of different combinations of meds for the past eight years and am already feeling much benefit.

  • Thanks for your comments Clutter. Its weird because I had been wondering about the masking thing myself. I do all sorts of stuff to keep myself okay meditation and yoga etc and mostly I'm feeling well balanced.

    If I get the adrenal stress profile done what do i do with it when I get the results?

  • Trust your instincts Karuna. If you think you have some form of mental illness explore the different therapies available besides and including anti anxiety drugs and antidepressants. I've found a SAD lamp very helpful during the winter for bipolar low mood depression.

    Post the results of your adrenal stress test and someone who understands them will interpret and advise.

  • My instinct is more that I havnt got a mental illness. I only get the symptoms when I increase my thyroxine but it was just something that crossed my mind and I was surprised when the endo said it. I have had plenty therapy over the years and worked through lots of issues and I'm quite sorted now in that sense. My struggle over the winter I guess is just pure tiredness. I got a terrible virus which set me back too. Thanks I will do that as regards the test. I have taken your advice about the sea salt.

  • Many people find that it is very difficult to raise their hormone dose after being hypo for a long time. Some people actually get a setpoint at the lower levels and when they try to speed things up the body doesn't like it. You may want to try increasing your dose in tiny amounts over several months. Like go to 60 MCG instead of 50 for a month or so, and then up that by 10 for another month. Just see if you can do it that way. I am having to raise in tiny increments because of pretty bad "roid rage" when I raise the way most people do. Adrenal test is always helpful, and you need you iron, B12 and D3 up there in there ranges when trying to raise. Most say this only applies to t3, but if you convert well, it would apply to t4 as well. Low D3 can cause fairly bad depression and your body really needs it for metabolism. Many become very depressed in winter due to low D3. NDT works and each tablet is measured yo an exact amount. Your endo just believes his drug representative who happens to sell Levo.

  • SAD lamp one of the best investments I have ever made, haven't had a 'gloomy season' (usually Jan - about April) since I started using it and this must be my fifth year with it.

  • Hi Karunablue,

    Have you ever had your vitamin and mineral levels checked? Iron, ferritin, vitamin B12, vitamin D and folate? When my iron drops I get some agitation, jitters and anxiety.

    Also, I agree with Clutter. You need your adrenals checked - problems with cortisol levels can make you feel really awful. The Genova Diagnostics UK adrenal stress profile is very helpful. Sadly the NHS is generally totally unhelpful with checking adrenal health unless you are at one of the extreme ends of the spectrum - high cortisol and Cushing's Syndrome, or low cortisol and Addison's Disease.

    I am never impressed when I read about an endo dismissing NDT on the grounds that it is unreliable. If you do a google search for "history of synthroid" (Synthroid is a US version of levothyroxine, and is the one most commonly prescribed there) and read some of the results that come up you will be shocked at how bad it is in reliability of dosage!

  • Yes my Ferritin was 36 so at the low en but endo says thats fine. But I did wonder to get some spatone? My D3 was 51.3 when range started at 50 so I take 5000ug of D3 now and have been for a few months. Do you know what happens when you get the results for adrenals? Will doctor normally then act on them? I've started to use the sea salt. Eat pumpkin seeds with everything!!

  • Remember to take K2 with your vit D3!

  • Is K2 the one which helps veins? I know it is one of the Ks that helps make them stronger, just always forget which one it is.

  • About adrenals...

    Your doctor is unlikely to pay attention to the results of a saliva test. But you can post the results of those tests here and get some feedback on them. There are various supplements that can be taken to help with adrenal health, but you need to know whether you have low, high or mixed results before you can then decide how to treat.

  • Ferritin needs to be 70 no matter what he says theres plenty of research evidence to prove it

    as for his claims about NDT being anecdotal he would have a major row from my husband , daughter and grandaughter if he said it to them thats for sure they know just how rotten life was on thyroxine and even t3

  • I really trust listening to all these real life experiences. I work in the NHS myself and i know how they can get things wrong.

    Research can be skewed and biased. I will try NDT myself eventually if I have to.

  • First of all your TSH is too high for someone on medication. 50mcg is too low for many and this is an archived link which you can pick the topic for great information. You need an increase in meds.

    web.archive.org/web/2010103...

    Go to the date April 22, 2007 on this link re a low dose of hormone:-

    web.archive.org/web/2010103...

    I would have lost faith in this Endocrinologist. So many people have been sectioned/labelled when they actually had a thyroid gland dysfunction. He has to give you sufficient thyroid hormones for you to function. Also T4 has to convert to sufficient T3 for us to function.

    If you are taking Vitamin D you should also take magnesium.

    wellnessmama.com/3610/are-y...

    Excerpt

    Unfortunately, magnesium is often not well absorbed by the digestive track, and is even more difficult to absorb if you are deficient or are low in vitamin D, have poor gut bacteria or suffer from a number of other conditions.

  • Thankyou Shaws

  • Thank you for this link!!! I have calcium deposits in my soft tissue, tendons and ligaments. Very painful. I suspected a vitamin deficiency. Just didn't know about K. Since I have Celiac that is semi refractory, my gut doesn't do what it is supposed to. This article will be very helpful at the next gp appt.

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