Feeling let down and ignored by endocrinologists

[Kitty1watson]

Can anyone offer me some advice please? Sorry for the long post.

I saw the endocrinologist yesterday for the second time in about 9 months. First time he said he'd listen to my symptoms (yay!) but yesterday I told him everything is still the same (after 8 years) and I've got awful dry skin, brittle nails, am tired all the time etc etc. Same as when it all started in 2011. He just replied, "well, 175mcg levo should be fine". That was it. I was stunned. He wasn't even going to do a blood test until I said the last one I had was TSH only and they told me I was overmedicated.

I also have a lump in my throat that I can feel all the time. That's been there for 2 months. He felt my neck and said he couldn't feel anything and I'd need to see an ENT if I want it looked at.

I'm 6 months pregnant with twins and am dead on my feet. I realise that tiredness comes with the territory but lately I've been going to bed at 7 or 8pm and not getting up until 7 or 8 the next morning, still feeling awful. It's so much worse than when I had my son. I read somewhere that large babies are related to underactive thyroid and he was 9lb7oz. We know from scans that the twins are about double the average size at the moment. The endo didn't really respond when I asked about that. He has said twice now "you don't look overweight" but before I got pregnant I had gained over two stone with no change in lifestyle and had tried desperately to lose weight with no success at all. For my build and height I should be no more than 9st7lb, really. Going back on the progesterone pill helped me lose a stone with no effort a few years ago, but that plateaued and the weight went back on again after a while. I have no expectation of losing the current 'baby weight' once they're here.

I felt the 1.5 hour trip there was a total waste of time. Haven't got the blood results yet but will edit when they arrive. He ordered TSH, T4 and T3.

I don't know what to do, because he was clearly not interested in anything I said. I moved endos to him in the first place, because the closer one told me the only result he cared about was TSH and reduced my drugs on the basis of that, when my T4 was 12.2 (range 12.0-22.0). My GP said that was wrong and put it back up again and another GP then raised it still further on the same results. So I feel that neither hospital will help me and I am not sure how far the GPs will go when I'm supposed to be under the care of a specialist.

[Marz]

healthunlocked.com/search/p...

If you click onto the above link you will see other posts about your levels when pregnant - so scroll through to see which one interests you - there are thousands ! So lots of help there - hopefully.

I have often mentioned about Hypo Mums having big babies - this is due to the foetus sensing the Mothers thyroid hormones are low and so produce their own growth hormone to compensate. How clever. This is mentioned in the book by Dr Barry Durrant-Peatfield - Your Thyroid and How to Keep it Healthy ... available on Amazon.

I am sure you would have checked your levels of B12 - Folate - Ferritin and VitD - if low they could be making you feel extra tired.

Hope you soon sort things and everything works out well for you all ...

[Kitty1watson in reply to Marz]

Sorry, I obviously wasn't clear in my post. It's not the pregnancy issue, as such, it's the fact that I feel I have nowhere to go when the endos are simply not listening and don't seem at all bothered by anything I say. Yesterday's specialist didn't even intend to take a blood test, despite saying he didn't get provided with any I have elsewhere. He just said my dose should be fine. But I still have all the same symptoms.

Yes that's the book I read which mentioned about larger babies. I am concerned that if I still feel so awful, the babies may not be be getting what they need, but my main concern is that I'm not sure who else I can talk to as even the specialists seem so blasé.

I've done so much reading on the subject but what's the point when the specialists simply don't agree and ignore everything I raise with them?

[Marz in reply to Kitty1watson]

Have just re-read your post/thread of 9 months ago where Central Hypothyroidism was mentioned more than once based on your low results of T4 & T3. Has this been followed up with an Endo ?

Also did you test B12 - Folate - Ferritin - VitD ? If they come back low in range then it could confirm an absorption issue. All these need to be optimal for thyroid hormones to work well - yours and the ones you take. Apologies if you have posted them ..

So two things - the Central Hypo and absorption as mentioned by greygoose nine months ago. Humanbean gave excellent resources for Pituitary issues in the same thread. Maybe re-visit the thread ...

Stay on the dose that makes you fee better ...

[Kitty1watson in reply to Marz]

Yes he thinks I may have pituitary disease (although this week he said "it's more likely to be just strange results") but he wants to do a cortisol test. He can't do that until I'm not pregnant anymore because it causes stress to test what happens re cortisol.

My gp tested B12 and Ferritin when I went in feeling awful in early pregnancy and both were low. I'm taking iron supplements and B12 but they didn't say how much I should take so I'm guessing. I don't feel any different.

I don't have this week's results yet

[Marz in reply to Kitty1watson]

healthunlocked.com/thyroidu...

The link above takes you to your post/thread of nine months ago when Central Hypothyroidism was mentioned.

The best test for Cortisol is the 24 hour Saliva Test - which is done privately through several companies. See link below and click onto ABOUT TESTING in the menu ...

thyroiduk.org

Don't think spitting into a tube will harm your babes ...

What were the actual results for the Ferritin and B12 ? Which B12 and Iron are you taking and how much ? Good VitD levels are also needed both for you and your babies. Same with B12. So you also need Folate testing - if the B12 was low then it often happens that your Folate will be too. Absorption issues again . So they all need testing and you need copies of all your results so you can monitor your OWN progress and check what has been missed.

[Kitty1watson in reply to Marz]

Thanks, I followed most of the recommendations given last time and have revisited them several times since to check information.

The tests the endo wants to do are insulin stess tests and synacthen, so a little more invasive than spitting into a tube. I can only go by what he says he needs to do and what he advises is and isn't safe. If it was just a case of "spitting into a tube", there wouldn't be any concern as to harming the babies.

All I really hoped for was a few ideas as to what I can do if I'm getting nowhere with the endocrinologist. Having all the information under the sun at my fingertips hasn't done anything for almost 8 years, so I just wondered if anyone had any other suggestions of where to find actual help. It seems as though it's a common problem with no adequate answers. Thank you for the time you have spent responding.

[Marz in reply to Kitty1watson]

..... And I am only going by the pearls of wisdom I have gleaned from this forum after being a member for over 7 years. The Cortisol test your Endo is talking about is an early morning blood test I believe - - which is often discussed here as being not as reliable or as informative as the 24 hour Saliva Test which is a Private test ... Having had the 24 Hour Saliva Test for cortisol - yes it involves spitting saliva into a tube every six hours - as cortisol follows a circadian rhythm ... should be raised in the morning to give us the get up and go an lower in the evening to allow us to sleep ...

[greygoose in reply to Marz]

Sounds more like the endo is talking about a short synacthen test - a stress test - which wouldn't be good for the babies.

Kitty1watson , the problem we have here is that doctors do not believe in adrenal fatigue - something we talk about all the time on here. They believer that you either have Addison's or there's nothing wrong with you - either black or white, all or nothing - no grey areas. Adrenal fatigue is a grey area where you don't have a disease of the adrenals, but they've been struggling for a long time, taking up the slack for a failing thyroid, and they now need a bit of TLC.

A short synacthen test will only tell you if you have Addison's or if you don't - in accordance with medical beliefs. But, we realise that that's not good enough. So, we always recommend a 24 hour saliva cortisol test, where you spit into a tube four times in 24 hours, so as to get a complete picture of what your adrenals are doing. Medichecks will also test DHEA from that spit. From the results you will know if your cortisol is low enough to need a test for Addison's, or if the adrenals just need a bit of extra encouragement - or, could even be that you have high cortisol, in which case there are things you can do to lower it.

As Marz says, spitting into a tube is non-invasive and not in the least stressful to the babies, but will give you valuable information. I would highly recommend you go for that. If nothing else, it will set your mind at rest.

You're right, it's very difficult to get help when one's disease does not confirm, for the simple reason that the majority of doctors simply know nothing about it. They don't learn anything much about it in med school. They are, for the most part, incapable of trouble-shooting the endocrine system. And, what's more, most of them are slightly afraid of hormones. So, people like us are stranded high and dry with no-one to go to. From time to time, the odd star appears, like Drs Skinner and Peatfield in the UK, Dr Lowe in the US, and Dr Hertoghe in Belgium. But, they are few and far between. However, they leave us their wisdom in books, so that we can go on to help ourselves. Of course, it's more delicate when one is pregnant. What does your midwife say bout all this? Can she not help? I would not be happy about making any 'helpful' suggestions to someone who is pregnant, because I don't have the experience or the knowledge to do so. But, there are people on here who've been through it themselves. So, I think you should write a new post, stating in the title exactly what you want in the way of answers. That way, the people that know can reply. If you just give your post a vague, non-specific title, then it it can get over-looked. So, I would advise you to try again. Good luck. x

[Kitty1watson in reply to greygoose]

Thank you both. Midwife is hopeless, unfortunately, and barely remembers to do the standard urine test each time for gestational diabetes. She has no knowledge of endocrine issues. We're under a consultant because it's twins and she was supposed to have "an interest" in endocrinology, but she never mentioned it at all and we've seen her once (at 16 weeks) and then never heard again. She didn't even know I'd had a c section last time, and, presumably, that was in the file in front of her.

I just feel so depressed by it all after 8 years of hoping someone will "fix" me. I know I've said it before, but I've lost my entire 30s to this and there's no sign of getting help.

[greygoose in reply to Kitty1watson]

I've been hypo since I was about 8, and now I'm 73. And no-one gave me a thyroid test until I was 55. I've lost just about my whole life to it. No-one is going to fix us. And, I've seen the best France has to offer. I've had to do it myself.