Newbie

[Sashak]

Endo says I have mental disorder due to ongoing hypothyroid symptoms

TPO ANTIBODY 577.4 (<34)

TG ANTIBODY 601.5 (<115)

TSH 6.4 (0.2 - 4.2)

FREE T4 12.9 (12 - 22)

FREE T3 3.3 (3.1 - 6.8)

Is he correct?

Thankyou

[Nanaedake]

Oh my goodness, when is it going to stop?? Yet another Endo blaming the patient for a mental health condition when their TSH is clearly above range and no wonder you have ongoing symptoms. I can't help feeling angry on your behalf, you're undermedicated so you have symptoms.

An Endocrinologist is not qualified to make a mental health diagnosis. You don't have to accept his/her opinion because that's what it is, just a baseless opinion without any evidence whatsoever. In fact you've got the evidence in your hand that your symptoms are caused by insufficient thyroid medication. Your FT3 is very, very low.

Has your Endo put his 'opinion' in writing? If so, then refute it in writing and complain because you have not been given enough thyroid hormone. You have thyroid antibodies meaning you have Hashimotos thyroiditis. You need a dose increase and retest bloods in 6 weeks then increase again and so on until you reach a TSH of around 1 or slightly lower which is where most people feel well. This should raise your FT3 level. The alternative is to add in some T3 but if in the UK, this is almost impossible at the moment. Could you get a dose increase via your GP?

[Sashak in reply to Nanaedake]

Hi I am not on meds at the moment I haven't been diagnosed with thyroid problems.

[MikeM46]

Dear oh dear!

Endo appears slightly bonkers?

Not knowing what so called “mental disorder” symptoms you’re supposed to have, no point in commenting on that though indeed Endos are simply not qualified to assess that.

Before you get referred in that direction you really really must have your thyroid medication reviewed & “uptitrated”, i.e. increased.

What is your current medication & dosage?

Whatever, must get your thyroid state sorted first. Has the Endo not already said that?

[Sashak in reply to MikeM46]

Constipation tiredness muscle cramps dry skin heavy periods weight gain depression

No meds

[Boohbette17]

Oh I dont think he is right! So, as the other members mentioned you have raging hashimotos which would make anyone at times ( and several times a day ) act up. I did & I too had high antibodies before starting levo & about a year later cytomel. Could you have a true mental illness, well only a specialist can say but first & formost you need thyroid medication & diet changes to calm your system. Go gluten free & often dairy too ( people tend to be srmsitive to a protein in it, casein) eat a variety vegetables to nourish & fill up ) try at least 3 months & I bet you will feel a vast improvement! Hugs!🌸🤗🌸

[SlowDragon Administrator]

No and you should object to this being put in your notes

What dose are you on? How long have you been on this?

You have Hashimoto's also called Autoimmune Thyroid disease, diagnosed by high thyroid antibodies

You are extremely under medicated to have such a high TSH.

The aim of thyroid replacement hormone is to increase dose slowly in 25mcg steps, retesting 6-8 weeks after dose change, until TSH is around one and FT4 towards top of the range and FT3 at least half way in range

Ask GP for 25mcg dose increase.

Highly likely to have low vitamin levels too. Ask GP to test vitamin D, folate, ferritin and B12. Post results and ranges if you have them

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

The endo you saw was probably a Diabetes specialist , certainly didn't know anything about thyroid. They are not qualified to determine a mental illness and therefore you can get this removed from your record.

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

[e-mail]

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email [e-mail]. print it and highlight question 6 to show your doctor.

Prof Toft - also brilliant article just published

rcpe.ac.uk/sites/default/fi...

[Sashak in reply to SlowDragon]

No meds TSH was 80.3 (0.2 - 4.2) free T4 8.2 (12 - 22) 2 weeks ago

[HypoTrish]

I think you should ask him/her if your mental disorder matches theirs! Don't accept or agree with this please read learn and challenge these idiots who call themselves specialists!

Here is a thought for the day which I believe should become our Mantra

YES IT'S IN MY HEAD - IT'S EVERYWHERE -JUST BECAUSE YOU CAN'T SEE IT DOES NOT MEAN I DON'T SUFFER WITH IT

This slogan is for anyone who suffers from an autoimmune disorder and sadly misunderstood by those treating them.

[Hidden]

No you haven't, he has!

[nonconventional]

Sashak please can you give an idea of your symptoms that the endo is referring to as mental illness. My Mum has the same issue & a panel will be making a decision to give her psychiatric drugs on Monday. We are gathering info in her favour against this

[Sashak in reply to nonconventional]

Constipation tiredness muscle cramps dry skin heavy periods weight gain depression

[Hashi68]

Looking at this this way, I hope it might help you feel a little better.

Shortly after my hemithyroidectomy and Hashimoto’s diagnosis in 2004, I rapidly developed a lot of mental health issues (though to some extent the circumstances I was in at the time were not supportive, which didn’t help). I didn’t get any support or advice form doctors that it was connected to my thyroid, and I just thought I’d gone crazy. I was diagnosed with a personality disorder and sent to see a psychiatrist. I refuted that and they amended it to generalised anxiety disorder with agoraphobia. Now, years later, I can look back and know that I was actually suffering from unmedicated hypothyroid symptoms because it does affect my mental health and I know when I’m not right because that’s one of many symptoms I have. I personally feel better, knowing that I’m not ‘just crazy’ and that it’s a symptom of my thyroid disease. In some ways I think it’s good that they have acknowledged for you the 2 are connected because in my case doctors have never done this for me. You do need treatment, for your thyroid and your mental health will improve, but in the UK they won’t treat you until your TSH goes above 10, which is terrible! I hope they will support you - antidepressants aren’t a good solution when the cause is thyroid related. I really hope this helps 💜 best wishes!! x

[Sashak in reply to Hashi68]

TSH was 80.3 2 weeks ago so would I need treatment thank you

[marigold22]

I have seen two psychiatrists over the 36 year period that I have had Hashimotos. I didn't know it was Hashimotos Thyroiditis until January 2017 when I did a private blood test. My GPs thought I had a mental illness so sent me to the psychiatrists. My GPs were completely incorrect. I was very undermedicated. However, those blood tests of yours CLEARLY state that you have Hashimotos Thyroiditis and it is written in black and white. (Hashi's is Hypothyroid + thyroid antibodies). How dare an Endocrinologist (who earns a vast salary) misunderstand those blood tests. In actual fact, we all read on a daily basis that what has happened to you, happens to many others. They should be pulled up in front of the GMC under The Hippocratic Oath. They are negligent and there is no other word for it. You need medication for Hashimotos Thyroiditis. Follow SlowDragon 's advice.

[marigold22]

Sashak I hope you don't mind but I am going to use your experience of a rubbish Endocrinologist telling you that you have a mental health disorder as an example in a new Post. I had exactly that firstly in 1994 and then in 2006. It is still happening. I am aghast, disgusted, appalled that a qualified Endocrinologist can ignore blood result such as yours and say it's a mental health problem. I am completely well now, no thanks to endocrinologists or even Professors of Endocrinology and now on my own mission in an endeavour to 'pull them up' on their behaviour.

I truly hope you can get the medication you desperately need very soon. Please do send me a PM if you would like any info.

[SlowDragon Administrator in reply to marigold22]

I had exactly same, was severely hypo, with Hashimoto's, but they only wanted to slap on "anxiety" label.

Likewise I have learnt the hard way, with no medical support or advice on connection to low vitamins, leaky gut and gluten

It's only through help on here that learnt all about gut, gluten and vitamins

The mainstream medics still have little or no idea why just T4 doesn't work, or why T3/T4 combo doesn't work without fixing gut and vitamins first

[spongecat]

I'm not a doctor but the reason we have "mental issues" is usually because our hypothyroidism means we have T3 levels that are very very low. Our brains require lots of T3 to function properly. When T3 is scarce the body is clever and ekes out what there is for important functions to keep us alive and stuff like memory, our "get up and go", temperature regulation etc. gets put to the back of the queue.

Add to the fact that there are nutritional deficiencies because of probable absorption problems in the compromised gut and you have a perfect storm.

He is an endocrinologist and not trained in diagnosing mental illness anyway. Probably needs to be revalidated and demonstrate his/her understanding of the thyroid and patient care.

This has made me so angry. I hope you get the treatment you deserve, Sashak. Stick around we will give you as much support as we can.

[Angel_of_the_North]

Don't worry, your endo has a mental disorder - god complex/infallibility. Your bloods show that you are very undermedicated - your TSH is over range when it should be under 1 and your free T4 and free T3 are both at the very bottom of their ranges - you must feel awful.

Your endo is not a psychiatrist or a psychologist so is not qualified to pronounce on mental health (and by the look of it, not qualified to deal with thyroid problems either).

I think you need to see a different endo and make a complaint about this one's behaviour.

[Jamesdan14 in reply to Angel_of_the_North]

im currently on 75 levo and i take 100 sertralene, i have always had problems with worriying about health with slightest symptom i blow up in my mind it is something serious like the big c, this has been going on for years and when my second child was born it got worse and i was put on 50 mg sertralene , however 15 years on this jan i started to feel like my mental health was returning and was going crazy with worry, had various sypmtoms and was diagnosed with hypo, started off on 50 levo and increase from 50 mg of sertralene to 100 . then another increase of levo to 75 . felt fine but mind starting up again feeling that horrible worry all the time, slightest symptom im turning into terminal . i truely hate my mind it just rules me and i just want to be happy and enjoy my family instead of this constant worry of death looming over me all the time, doctors dont help , counciling hasnt helped just worry worry worry , ps also have high anti bodies but doc never said this was hashimotos found that out on this site ,

[SlowDragon Administrator in reply to Jamesdan14]

Well 75mcg is a low dose

Anxiety is a classic symptom of being under medicated

What was your most recent TSH, FT4 and FT3

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Did you get vitamin D, folate, ferritin and B12 tested?

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Extraordinary thing is gluten can also cause anxiety

ncbi.nlm.nih.gov/pmc/articl...

So if you have not tried strictly gluten free diet, would really recommend on try it.

You don't need any gut symptoms at all

[MikeM46 in reply to Angel_of_the_North]

My thoughts exactly Sashak!

So this is the Endo? Does your GP have sight of these test results as well?

As far as the Endo is concerned, going by what

You’ve reported here you might consider writing (yes, a real paper letter!) to the Hospital Trust’s Chief Exec complaining about the Endo’s total failure to understand hypothyroidism symptoms and test interpretation & diagnosis protocols. Also state you fail utterly to see how he had arrived at suspecting mental health issues.

Finish off the letter stating You are on the point of complaining to the Care Quality Commission but before so doing await his/her reply to your concerns!

Seriously, this Endo should

Be reported to the appropriate disciplinary body & at least disbarred from further treatment of Thyroid-related patients until undertaking an appropriate cpd course.

[Sashak in reply to MikeM46]

Yes this is the endo and GP doesn't have access to results will report endo thanks

[Kell-E]

The way I read it was that he was attributing mental symptoms to continuing hypothyroidism. Maybe I read it wrong?

[Sashak in reply to Kell-E]

No he says with a TSH above range my symptoms are not thyroid related and are in my head

[Kell-E in reply to Sashak]

Yeah, then he is an idiot.

[MikeM46 in reply to Sashak]

Hi Sashak,

Seriously worried that this Endo may still be let loose on hapless Thyroid patients!

Please do keep us informed as to whether or not you are going to complain or indeed have already done so!

Also, your GP surely must be sent the test results!

Finally, up to you to say or not but think we’d be interested in knowing which hospital trust this Endo is based at.

In the meantime hope you are making progress in getting suitably medicated?