Severe hypothyroid symptoms (generalised myxoedema) but normal results.

[B0896]

Hi there,

I have started posting on the site since I have experienced severe symptoms of hypothyroidism yet my test results disagree. My TSH has often been slightly elevated, but last time it was 2.5 with upper normal Ft3 and Ft4. I have tested TPO antibodies and they have been negative twice now. It's really starting to get to me and I was wondering if anyone here has any idea about what could be happening in my case. My only lead is that I have some kind of resistance on a cellular level, and have an appointment with a private thyroid doctor (on the recommended list) to hopefully get the ball rolling. This all started during a time of chronic stress. Is it possible that high cortisol levels could be the culprit? I heard that this can cause resistance. I have also tested for vitamins etc and they were all mid range apart from B12 which I still need to test for.

Other symptoms include crippling fatigue especially in the morning.

Severe memory loss (short term and long term).

Sudden thinning of hair, and brittle texture.

Flushed face almost permanently.

Muscle weakness.

Trouble breathing (connected to the swelling).

Anxiety and irritability.

Mild depression.

And probably many more I can't remember right now..

I'm certain it is thyroid related. As I have the typical spongy, generalised non-pitting edema that according to my research is unique to the condition.

Does anything spring to mind when you read this?

Many thanks in advance!

[shaws]

I will give you a link from Thyroiduk.org.uk which will be of interest.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

Doctors are ignorant of clinical symptoms nowadays and their diagnosis is of a piece of paper on which the results are stated. Unfortunately that's not helpful for someone who is suffering.

[B0896 in reply to shaws]

Thank you Shaws.

It is difficult when you have such obvious symptoms but nothing to support it. My Ft3/4 was not above range so would that rule out thyroid hormone resistance? I'm really lost for ideas atm and have been trying to sort this out for a year.

[shaws in reply to B0896]

It is very frustrating for you when obviously unwell. Maybe this archived link might be helpful in some way. These are by a doctor who was an Adviser to Thyroiduk but died through an accident. You may have already read them.

web.archive.org/web/2010112...

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

web.archive.org/web/2010081...

[shaws]

This is another link by a deceased doctor who had the same viewpoint, more or less about the diagnosis/treatment of undiagnosed patients:-

worldthyroidregister.com/Fo...

[B0896 in reply to shaws]

I haven't read them. Thank you for this

[silverfox7]

Can you post your FT3 and FT4 results with the ranges. Ranges are important as they differ from lab to lab. From your comment I'm thinking that they are in range but it's where in the range that matters and also the ratios. That way we should be able to tell you whether you aren't taking enough or whether you have a conversion problem as vitamins need to be high in range for us to be efficient in doing that especially with B12,Vit D and folate.

[Hidden]

I'm just throwing out a few possibilities, some that I picked up in an article by Dr. John Dommissee, a psychiatrist in Arizona. Central hypothyroidism, which is a malfunction of the pituitary and is treated by giving liothyronine or NDT until symptoms resolve and ignoring TSH. Elevated cortisol, which you mentioned, or elevated estradiol, called estrogen dominance. Non Thyroidal Illness, which means something unknown is interfering with thyroid function.

Another interesting piece of this puzzle was a reference to a Dr. Bo Wikland(sic) in Sweden. Some of his patients were complaining of hypo symptoms, though their labs were normal. Dr. Wikland decided to do a fine needle aspiration and found that some patients had severe inflammation of their thyroid despite negative TPO and TG AB.

One point many of us can agree upon is that there aren't many GOOD endocrinologists. I was diagnosed with sub-clinical hypothyroidism by a psychiatrist 22 years ago. He listened to my symptoms and told me, without missing a beat, that it was my thyroid, for which he prescribed Cytomel(when it was inexpensive, lol). No labs. And it worked. He told me psychiatrists know more about thyroid disease than endocrinologists and much of what I've learned has been from reading articles or blogs by psychiatrists and there's precious few good ones of them, too!

Doing your own research is important, even if the specialist won't listen. Learn as much as you can and if a doctor doesn't like to be challenged, find another one, if that's possible. Mediocre or poor doctors are the reason some of us self-treat. We want our health restored, instead of spending time arguing with a block head doctor.