T3 - Heart - adrenals / thyroid goitre

[Numberone1]

I was diagnosed about 10 years ago with underactive thyroid. Went on T4 and felt ill. Had really bad foot pain ie top of both feet in bones, feet tingled and I felt generally I’ll. aftermuch research I saw a private endobwho wrote to my gp that I couldn’t convert T4 to T3. My GP and the CCG wouldn’t approve so I had to source T3 myself and my life became good and well.

Run the time clock forward some 5 years, still feel well. Still can’t lose weight. Have put on many stones. Even my foot size has gone from 5 to a 9! Extreme sweating. I was dripping and told it’s my age. I even wondered about Cushings but the idea was dismissed.

A lot has happened to me now. The foot pain had disappeared once I stopped taking T4 but now I seem to have developed some arthritis in my knee. Doctor heard a heart murmur which I’ve always had, referred me for tests and it would appear I have a diseased possibly congenital heart valve issue. I need open heart surgery very soon but as part of the work up for surgery, I had a ct scan. This showed a lung nodule and bilateral enlarged adrenal glands. Still nobody has referred me to an endo re adrenal glands.

So I had to have a PET scan because of the lung nodule which they think is old scarring. Still no mention of the adrenal glands. They think I’ve got a multinodular goitre on my thyroid which cannot be seen on my neck. So I’ve had an ultrasound scan on my thyroid this week with results going to my gp. Still no mention of adrenal glands. Still no referral to an endo. This has all happened since the beginning of the year. Can you imagine how fraught I have been.

Bear in mind I still feel really well, people who don’t know me comment how well I look and yet I have severe aortic stenosis of my heart valve needing surgery very soon . At the stage I’m at I’m meant to be passing out, not being able to talk without being out of breath, not being able to lay down and breath, not feeling dizzy. Can anyone explain to me about enlarged adrenals. Why is nobody doing anything? Is the multinodular goitre connected? Who should I be insisting on seeing before heart surgery and do the thyroid nodules have anything to do with me taking T3 only? I feel the best I’ve felt in years except I have all these things hanging over me. How on Earth is this possible I just want to get on with my life.

Help please because I feel like I’m falling into a web of despair especially as I don’t actually feel ill.

[greygoose]

I can't answer all your questions, but I will say that the nodules on your thyroid have nothing to do with taking T3. The majority of the population has thyroid nodules, whether they have thyroid problems or not. I have lots of nodules on my thyroid, which were found before I started thyroid hormone replacement of any kind. (I now take T3 only, like you).

Do you have Hashi's? If so, the goitre could be due to that. A goitre is not on your thyroid, it is your thyroid, which has swollen. Quite a few things can cause the thyroid to swell, but I'm pretty sure that taking T3 doesn't do that.

[Numberone1 in reply to greygoose]

I’m not sure I know what Hashi’s is. How is it diagnosed and what is done to treat it. I know it’s an autoimmune disease and for those kinds of reasons, I try to stick to a gluten and dairy free diet. Joint pain etc are much worst, flare ups etc if I don’t do that.

[greygoose in reply to Numberone1]

A brief run-down on Hashi's:

Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

After every immuns system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can do for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH

suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

I really don't think that gluten/dairy-free can stop you getting Hashi's, nor cure it if you've got it. There can be many causes. But, if restricting your diet in that way makes you feel better, then it's worth doing.

[Numberone1 in reply to greygoose]

Thank you. Being gluten and dairy free definitely makes a difference to me. I started doing it because the arthritic pain I was feeling and general unwell feeling. My Aunt who is hypo was also crippled in pain and then it was found she had coeliac disease. She stayed away from gluten obviously and it was like a miracle. She no longer needed a stick or other walking and neck aids. Im not coeliac but I thought that gluten was obviously making a difference to her mobility.

I think you said you have nodules on your thyroid. Have they suggested a reason for that/have you had to have anything done with them? Im just waiting for my result.

[greygoose in reply to Numberone1]

Yes, I do have nodules, but I really don't think they're a problem. They're not growing at all. I've never had a goitre and now my thyroid is the size of a pea, due to Hashi's. No-one has ever suggested anything needed to be done with them. I was just told they weren't a problem, just something that most people have.

[Lora7again]

I have to add that greygoose is right but I do know my nodules cause me problems.

endocrineweb.com/conditions...

[Numberone1 in reply to Lora7again]

Thank you and I’m sorry your nodules are causing you problems. I wouldn’t even know I have any. What problems are you having specifically.

[Lora7again in reply to Numberone1]

My throat aches sometimes and I choke on food but I am not going to have it removed because my thyroid is working ok at the moment.