No diagnosis - why are we not surprised?

[Wlorenm]

So I posted this the other day -

healthunlocked.com/thyroidu...

Despite saying "well you feel like you're going hypo you aren't yet" and is reluctantly testing antibodies. Sickened doesn't begin to describe...

[Clutter]

Wlorenm, Did the endo say that?

[Wlorenm in reply to Clutter]

Pretty much. She's only treating me because she wants to investigate the goitre. And even though she listened to my symptoms and despite them being severe, she's refusing to test T3 but will test antibodies. Is basically putting the majority of my symptoms down to iron.

[Clutter]

I wonder why she's not concerned about the low FT4? When do you see her again?

[Wlorenm in reply to Clutter]

She didn't really say. I think it depends on the scan results. Basically if it comes back "clear" of disease I don't think she'll do anything. She just told me to take iron.

Feeling so defeated. She told me weight gain was from "not eating breakfast". Apparently 800 calories a day for a year simply to maintain weight is the reason for sudden weight gain. Apparently low iron accounts for everything else I listed. Apparently the goitre is coincidence. She'll recheck in 3 months otherwise.

I can't live like this for another three months. It's hell.

[Clutter in reply to Wlorenm]

She's right about the starvation diet, Wlorenm. Your body will hang on to fat when it thinks it's being starved. Your weight gain is probably mucin and water and calorie restriction won't help shift it and may exacerbate your hypothyroid symptoms.

If you can't hang on for 3 months your only option is to self medicate. It would be wise to check your FT3 status prior though and you can order a private test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

Ferritin 70-90 and vitamin D >75 are required for good absorption of thyroid replacement so supplementing now will stand you in good stead. Iron should be taken with 500mg-1,000mg vitamin C to aid absorption and mitigate constipation.

[ancilla]

Release the hounds!

So angry there are other people out there suffering like this - I really thought I was just really unlucky with doctors etc - but it's everywhere! This whole forum seems to be about the bad attitude / incompetence of doctors. This lady is a teacher - god knows how she's keeping that up - I can barely get myself in order to drive kids to school and back - lost my job already this year. How many others out there are having their lives ruined like this? We have perfectly treatable illnesses but are struggling to get the Docs to treat us? Mad.

Rant over. Sorry

[Wlorenm in reply to ancilla]

I appreciate this rant so much.

Can't believe it would feel like my life is over at 23. I am wasting my 20s because some idiot won't write thyroxine on a goddamn prescription pad.

[ancilla in reply to Wlorenm]

I was 20 when my thyroid failed. Took them a year to diagnose. Dr said it was because I was too young and it was a disease of older women, so they weren't looking for it. I went to the surgery every week for months for them to tell me I was depressed/didn't realise I was overeating(!?)/just attention seeking. By the time I was diagnosed I was in danger of collapse with FT4 less than 2.

Tempted to say go back and tell them you're very unhappy - but all they do is add in to your notes you have a mental health problem and this will affect your job prospects/insurance etc for the rest of your life, even if they later find they were wrong - trust me I know.

I so hope you get sorted soon - no idea how you hold down a job through this x

[Angel_of_the_North]

*Sigh* the only things you can really do is find a GP (private or NHS) or and endo who doesn't need beating about the head with a clue bat. Haven't any of them read the newer research on intermittent fasting, showing that missing breakfast can decrease weight and help longevity (more in men than women) or the old research that shows that all calories aren't created equal? Or heard of Occam's razor (the simplest answer is often correct) - you have a goitre and low T4 - that is hypo, which causes weight gain - you have weight gain ...

I think the NHS removes their employees' logic circuits at induction.

Not good for my adrenals.

[HarryE in reply to Angel_of_the_North]

Angel, even though I work for the NHS I sadly have to agree that a lot of circuits seem to have gone missing (I hope I am an exception!). But your 'beating about the head with a clue bat' made me laugh out loud!

[Wlorenm in reply to Angel_of_the_North]

Replied below :)!

[editfmrt]

You poor thing. How you are coping with teaching as well is remarkable.

If this so called expert is so concerned about your low iron levels (which will be contributing to your symptoms) what about the million dollar question? WHY have you got low iron? None of them seem to look at the causes or the whole picture. So many people with thyroid issues present with low levels of iron along with vitamin and other mineral deficiencies. The longer it goes on the more confusing the picture becomes.

You can wait and see the outcome of the tests and whether that will convince them to do anything and/or you can look at choosing another provider privately. Thyroid UK had a list of doctors you may want to consider.

Although weight gain causes many on here lots of anxiety (made worse by pathetic and ignorant statements by doctors) my personal view is to focus on that symptom a bit further down the road once you have managed to get a diagnosis.

Hope you get some solutions soon x

[Wlorenm in reply to editfmrt]

Thank you unfortunately this was a private consultation and I'm in Northern Ireland. I'm just getting the same crap responses six months earlier than everyone else on the NHS.

I know it's so easy to say about weight but I'm 23 - I feel so low I don't want to even cross the door. It's impacting my social life and everything. My clothes don't fit. It's absolutely torture and it feels like not one person outside of this forum understands. Nevermind that I teach 11-18 year olds and they comment on EVERYTHING.

I don't get why they won't just medicate it? What more does she need? She laughed when I asked her to test T3. She hasn't even made a date for the scan. I mean if there's a chance of cancer (she checked everything - lymph glands etc) why is she not rushing this through?

I am so so so fed up.

Endocrinologist? Effing. Useless.

[editfmrt in reply to Wlorenm]

Ah sorry to hear this. I didn't mean to minimise your stress about the weight issue - it is very important and clearly causing you a lot of issues. What I was inferring is that until you manage to get someone to help you with some treatment the weight issues just like the other symptoms will be so difficult to resolve -as you are finding.

It's a travesty that even paying privately you can't get the right help and you have my greatest sympathy.

Although it's wrong (because your symptoms do indicate a thyroid issue) they are unlikely to do anything with a TSH in range, even though your FT4 is just below. Before they had the slavish reliance on the blood tests they would treat on symptoms.

I think you are right there is more chance of being taken seriously with the goitre so it may be worth waiting to see the outcome of that and the anti body tests.

In the meanwhile, your low iron will be making you feel rotten too and the thyroid needs optimal iron levels to function well. Although I think they should be investigating the cause of your low iron, perhaps getting that sorted with some good iron supplements may help. Perhaps post another question about the best supplements to help with that?

I use Spatone (taken with vitamin C) because it doesn't cause constipation like standard iron tablets which also cause other side effects for so many people. However, Spatone works for lots of people but others say it does nothing to raise their levels. You just have to find the best one for you.

I think others have mentioned getting B12, folate and vitamin d levels checked too as deficiencies can cause similar symptoms to lie thyroid.

Failing all that you may have to consider the very difficult choice whether to self treat. I'm not recommending that because that is a decision that only individuals can make themselves having considered the risks.

Could you ask your GP/endo for a trial on thyroid meds - possibly intimating you may be forced into difficult choices if they will not support and help you?

It's all so wrong that you can't get the help you need.

[humanbean]

I can't find any reference to what your iron levels actually are. But if you have low iron then it makes an already desperate situation even worse. Been there, done that, got the t-shirt, as the saying goes... So don't dismiss the iron just because it doesn't deal with the underlying problem. You will feel a bit better when your levels have gone up. The same goes for vitamin B12, vitamin D and folate, all of which your doctor should agree to test.

Assuming you have Hashimoto's then I have read some good reports on the stuff that Izabella Wentz writes - she has a book and a couple of websites, plus a page on Facebook :

thyroidlifestyle.com/

thyroidpharmacist.com/

It can be soul-destroying when we get completely shafted by the medical profession. *Hugs*

[Hidden]

I went through the same process. I felt my goiter arrive - a rush of fluid from under my ear and a sharp pain. My GP referred me for an ultrasound which confirmed a multi nodular goiter. I was then referred to an ENT Consultant who put a camera through my nose to throat. Confirmed diagnosis and told me the nodules were not cancerous. He then referred me to an Endo who confirmed high peroxidase (off the scale) and auto immune thyroiditis. I had the full throid blood test at this time including T3, 4 etc etc. the Endo could not tell me if goiter would grow and left it to me to decide whether surgery was appropriate for either breathing problems or cosmetic reasons. My goiter has grown a little in the past two years and whilst I am very conscious of it others are not!

In the past two years I have had 6 monthly blood tests and my TSH is well within range. I did try a gluten free diet for a period with the hope it would reduce my antibodies. I asked for peroxidase to be tested again after maintaining a gluten free period. Sadly, the gluten free diet did not help me although it has helped others. I did read a research document recently indicating that some 8% of those suffering from auto immune thyroiditis do have problems with gluten. Of interest is the helpful comments from the lab to my GP when blood tests indicate anything out of range. The report indicated that 6 monthly blood tests were essential to monitor me!

I am not on medication and to be honest I do not want to take thyroxine unless I really have to. I have followed advice on this site and have had various tests to ensure B12, ferritin, etc are maintained. My GP has been happy to test and discuss issues with me. I am remaining positive and hope I can maintain my current health.

[Hidden]

I recommend that you google Autonomic Nervous System Health/Dr L Wilson and also Keeping your Autonomic Nervous System Health by Lawrence Wilson MD - 2 similar articles by same person. Also ARL: Nutritional Causes of Allergies at Arltma.com. Then it would be wise to get a hair mineral analysis done.

I am in Australia but have had a couple done by Trace Elements in the US. The last one was $120 Australian but it is well worth it. You can see what minerals are high or low and what the different ratios are. They also recommend a diet to help balance the body.

It seems that when our autonomic nervous system is out of whack that we get all sorts of diseases and allergies. It is the body trying to repair itself.

I hope this helps.