Hair loss, chest pain and neck ache... Anyone else have these symptoms? Please recommend a good doctor...

[mpsun]

Hi all, this is my first post. I'll make it as briefed possible. March 2016, I had radio iodine treatment for hyper... Afterwards I was put in a tiny 12.5mg of thyroxine even though my ranges were dropping like a stone Into deep hypo, 2 month later I collapsed and entered into a type of coma. They pumped in 200mg of thyroxine over the next week and I came round. Since then I have been on 125mg of thyroxine. I feel like crap. But the main issues are chest pains, neck ache and in the last 4 weeks hair loss. The doctor says I am on the correct dose. My TSH before AND after all of this drama has remained the same 0.03. My t3 is at the higher end of the range. Does anyone think I should add t3, or even change over to NDT? I live in spain and the endo's here haven't even heard of ndt. I would like to travel to London to see a specialist but only want to see a doctor that pro going down NDT route. Can anyone recommend a good one in the London area?

Thank you X

[greygoose]

Do you have and FT4 result? And do you have the exact number for the FT3? Have you had your nutrients checked - vit D, vit B12, folate, ferritin?

It's possible that your TSH will never rise after being hyper. But, it really doesn't matter. It's the Frees that are important.

[mpsun in reply to greygoose]

Hi grey goose

Thankyou for coming back. I have read a few of your comments to others and you are super helpful

My bloods are;

FT4 1.55 (0.71- 1.85)

FT3 2.93 (1.4 - 3.5)

Prolactin 10.61

My vid D is good and I'm a bit low on ferratine and iron, I'm supplementing now

I just don't feel right and the hair loss is massive, and the neck pain unbearable. I take my thyroxine at night time as I can't stand the side effects during the day and I have to work in a quite high pressures environment. Taking it at night has helped a lot as I sleep through the worst

[greygoose in reply to mpsun]

Well, both your Frees are about mid-range, so could be higher. You don't appear to have a conversion problems, so maybe just an increase in dose would help. Doctors don't realise that if you still have symptoms, you absolutely are not on the right dose. Do you think you could beg, cajole or bully him into giving you an increase?

It has to be said that T3 and/or NDT don't suit everyone, anymore than T4 does. We're all different and have to find what works for us. It could be that the T4 doesn't suit you, but nothing will suit you if you're not on the right dose. But, if you've only just started losing your hair, I doubt it's the levo causing it.

And I very much doubt you'll find what you're looking for in London! From what I've heard, anyway. Somebody might come up with a good one, but if not, I know a pro-NDT doc in Paris.

You didn't mention a B12 result. If your B12 is low, that will cause all sorts of terrible problems. So, if you haven't had it tested, best to do so.

[mpsun in reply to greygoose]

I can easily up the dose, the doctor told me to reduce to 112.5mg from 125mg becuse of my symptoms. He said it might make me feel better. At the appointment , he also said he thought I was on 150mg anyway so he clearly got me mixed up with another patient. I thought reducing the dose might make me feel better but maybe not from what you are saying.

There's no prescriptions needed here for thyroxine, you just buy it at any dose when you need it. Don't know if that good or bad!

My b12 is a little low too, but I'm on vitamins for that too. But will look into that again.

Thanks again. 🙂

[greygoose in reply to mpsun]

Well, it's good for you! lol Is T3 without prescription, too? So, that test was done when you were taking how much? Did you reduce to 112.5?

When you say you're taking 'vitamins' for your B12, what exactly does that mean? What are you taking, and how much? It would help if you gave the actual number and not just say it's 'low'.

[shaws Administrator in reply to mpsun]

If you can get liothyronine that might assist you to feel better, to a reduced levo.

[HASHISmom34]

i have a friend who has graves! she was very sick and had the thyroid out yrs ago. NDT is the only thing that made her feel right. She gains weight and feels crappy on synthroid.

[mpsun]

I have graves too, I forgot to mention that earlier.

Just. Checked a blood test from a couple of months ago (mid June) and the B12 is low. 121 (range 211-911)

Vit D 250H 40 ( range 30-100)

But that reading is from June. This is when I collapsed and spent a week in hospital and my T4 free was 0.78 (range 0.8-1.8)

What's the quickest way to get b12 intake up?

[shaws Administrator in reply to mpsun]

If you supplement with sublingual methylcobalamin B12. The new suggestion is that the top range should be 1,000.

[shaws Administrator]

Welcome to our forum and you are the second person today who've developed a coma through being undiagnosed. What is going on!

If your thyroid gland has been knocked out altogether, I think it is right you should be given more than levothyroxine, i.e. T3 added to your T4 or NDT.

When you have a blood test for thyroid hormones, it should be fasting and the earliest possible. You can drink water though. Also allow 24 hours approx between your last dose of levo and the test and take it afterwards.

Always get a print-out of your results with the ranges for your own records and post if you have a query.

Ask GP for B12, Vit D, iron, ferritin and folate as we are usually deficient.

We dont post names on the Open Forum for doctors/endos but by Private Message to you and you can email [e-mail] who has a list.