SOS... on paper I'm fine?!: So.... after months... - Thyroid UK

Thyroid UK
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SOS... on paper I'm fine?!

Saz-J
Saz-J
β€’7 Replies

So.... after months of pushing for a referal I have had 2 appointments with an endo (I already see one for my diabetes so wanted to see a different one for the thyroid issues) and on my second appointment today it wasn't good news...

I was checked for Addisons disease which I haven't got. Iv been told I have hashimotos (without doing a scrape they can't say for definate but my levels are so high theyv said it looks like I have)

They also done every single blood test you can think of to try and figure out what is going on.... I wanted a copy of my bloods but tbh I was so upset with the appointment I just wanted to get from there.

Iv been told that there is no reason what so ever why I feel the way I do every day of my life other than the fact I may be one of these people who have the symptoms regardless of what their levels are doing and how balanced they are...

I'm at my whits end. I honestly feel broken. I told them in my last appointment I can't live like this anymore and I was hoping for answers and all I had today was a plate for of nothingness and lost hope (he said my symptoms are subjective?!)

So I'm reaching out to anyone in the same boat as me... 9 years of levothyroxine and not a single day without the symptoms stopping me from doing something or sending me back to bed... What do people do?! What can I do to try and get my life back seeings as on paper I'm fine?!

πŸ˜”πŸ˜£πŸ˜ͺ😭😧

Plz find below my pic of results. I had what they told me the "full works" including tests that had to be authorised before carrying out... however the results iv been sent just look like the basic and nothing compared to the results he showed me on screen

7 Replies
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SlowDragon
SlowDragonAdministrator

Did you mean to repost this same post from a month ago

Many of us had many similar disastrous consultations over the years

As you have Hashimoto's are you on strictly gluten free diet?

What are your vitamin D, folate, ferritin and B12 levels?

Can you add most recent results and ranges

You are clearly under medicated, TSH is much too high and FT4 and FT3 too low

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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 print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Also request list of recommended thyroid specialists. Your current endo most likely a Diabetes specialist

Saz-J
Saz-J
in reply to SlowDragon

I posted it as a new post because after posting pics of my results I never had any replies. Well this is why I'm so aggravated now.... all of these tests were done and yet I haven't been sent any of the results despite waiting nearly 2-3 weeks to get them.

Unfortunately yes he is a diabetes specialist despite giving me the grand talk about the thyroid side of things. I'm a really considering going private despite not being able to afford it. I feel like if I go back to my gp to be referred itl be another year pass and Il be in the same situation. However there was a professor I wanted to see in a different area to me and I was told by my gp I couldn't go direct to him without going through the process I just been through, however when I spoke to his secretary she said they could of reffered me straight over. Think I might go to the GPS and request to go and see him again. So hard when they look at your bloods and assume you are totally fine! πŸ˜”πŸ˜”

shaws
shawsAdministrator
in reply to Saz-J

Many members have given up on doctors or endos and have 'gone it alone' with the help of members. We are then free to choose which hormones to purchase and increase when or if symptoms aggravate us.

Saz-J
Saz-J
in reply to shaws

At this rate the thought of that petrifies me. I am building myself up with knowledge slowly and consistently but I'm still stuck in the rut of feeling so heartbroken that even the professionals don't want to help πŸ˜” x

Saz-J
Saz-J
in reply to SlowDragon

And sorry i forgot to say... I am not on gluten free. With regards to the hashimotos I have had no information support or anything at all. I only knew about it a week before my appointment so it's all new to me. I haven't had much time to much research either so I am still clueless at this moment in time πŸ˜” x

SlowDragon
SlowDragonAdministrator
in reply to Saz-J

Then your first steps are self help by changing to strictly gluten free diet and getting vitamins optimal

Have you had vitamin D, folate, ferritin and B12 tested recently?

If not getting full private blood tests is first step

Then come back on a new post with the vitamin results and ranges and members can advise on vitamin supplements needed

Are you type one diabetic? Or type two?

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect 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, often significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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

Ideally ask GP for coeliac blood test first if not been done

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodi also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Bunnyjean
Bunnyjean
in reply to Saz-J

Try not to worry and carefully take in the information on this site. After I had my thyroid removed I was put on Levo and it made me very ill. I saw two endos and the doctor but soon gave up on them.

I joined this site after 7/8 months on Levo and found out about taking NDT I am now well. I take a Blue Horizon thyroid plus 11 test once a year just to check my results and never visit the doctors or Endos. I self medicate too.

If I can get well so can you it does take courage and a leap of faith , good luck.

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