Help with getting a diagnosis: Hi all, I have... - Thyroid UK

Thyroid UK

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Help with getting a diagnosis

Punkyoungirl profile image
9 Replies

Hi all,

I have been struggling for years now with symptoms of hypothyroidism. It’s all really come on over the last couple of years. My weight is out of control, I’m freezing all the time, my hair is dry and brittle, plus many other textbook underactive thyroid symptoms.

I’ve been to the doctors several times and each time they do a blood test, tell me it’s all normal and send me on my way. The symptoms never go. My last visit was a full thyroid panel and it still all came back normal. I was basically told I am being hysterical and these symptoms are all in my head. I left my drs surgery and just cried in my car.

I can’t keep going on like this. My parents are convinced it’s something to do with my thyroid. It’s not like I’m the only one in my family who has issues. My great-grandmother had thyroid problems, as well as my Nan (they both grew up at a time where it was just simpler to remove the thyroid all together). My mum also doesn’t have a thyroid. It started as hyperthyroidism then hypothyroidism and eventually became thyroid cancer and had it removed after going through rounds of radiotherapy.

I have pushed for years to get a diagnosis, bringing countless family members to my appointments to help them corroborate my story. And the minute I seem to have a glimmer of hope I get told blood tests are normal and they can’t help me.

Has anyone else had this issue? Did you finally get a diagnosis? If so how? I’m at my wits end and I’m sick of not feeling like me being pumped with antidepressants and other weight loss schemes. Please help me!

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Punkyoungirl
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9 Replies
TiggerMe profile image
TiggerMe

How 'normal' was you last lot of full results? If you put them up we'll give you our two pennies worth

Punkyoungirl profile image
Punkyoungirl in reply to TiggerMe

I unfortunately don’t have access to them. I used to be able to access them via PatientAccess but my surgery doesn’t do that for some reason

TiggerMe profile image
TiggerMe in reply to Punkyoungirl

Probably best to get a finger prick test from Monitor My Health, Randox or Medichecks, I think using the code THYROIDUK saves you 10% from some of them let me go find the relevant link...

TiggerMe profile image
TiggerMe in reply to TiggerMe

thyroiduk.org/testing/priva...

This is an NHS lab

TiggerMe profile image
TiggerMe in reply to TiggerMe

Would be worth getting the surgery to print you off a copy for your records, they are obliged to do this

Buddy195 profile image
Buddy195Administrator

Welcome to the forum

So we can offer better advice, it’s good to have blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

In the first instance I would phone your GP surgery and ask for a print out of all your thyroid blood test results. You are legally entitled to these (although it may take a couple of days for them to arrange a print out). It’s important that we see the ranges as well as results (as these can vary between laboratories)

If your GP is unable to complete all the tests mentioned (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

SlowDragon profile image
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

DEFINITELY include testing BOTH thyroid antibodies and vitamin D, folate, ferritin and B12

ALWAYS test early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

elenak profile image
elenak

Welcome to 2023 - and this is not your grandparent's healthcare system - where patient symptoms were the primary diagnostic tools and labs and tests were supportive info. Now - it's all about numbers and "genetics" etc. and you are lucky if a doctor even takes his eyes off the screen to look at you - the human being.

YOU are going to have to take charge of your care - learn to use the lab values to help you, and what you learn to manage your own care. IF you can find a doctor to work WITH you, that is always ideal but not always possible.

You are most likely absolutely right about your symptoms.

The problem with the ranges now used (where are am, as well as where you are) is that they are just based on averages of the population the lab uses. So "normal" is based on all the people who have been tested. I'm in the U.S. and if I go to a public place and look at the people - the majority are overweight, and many very overweight and obese. This was not the case 50 years ago. So, bottom line is that "normal' is now based on sick, metabolically deranged people, not healthy people. Because in the U.S at least, they don't test thyroid on 'healthy' people without symptoms, so their data is not in the mix. People only get these tests if they have symptoms, or complaints. So you can see how the ranges are skewed and broadened, so what is "normal" now, has changed over the past decades. Not just with thyroid but all lab values. So "normal" based on laboratory ranges does not necessarily = optimal, or healthy.

I am in the U.S. and delighted to find this forum - that seems relatively uncensored. We'll see I guess, whether I get kicked off. :) I am like you - I suspect I have been hypothyroid for a long time, complicated by the fact that to treat my extreme fatigue, I was given stimulants. Which worked very well for quite awhile - however they mask the symptoms and lab results, so while I looked okay, but body continued to get sicker; despite 'normal' labs. This was before I learned what it appears most know here - that we have to manage our own care. Still, it is overwhelming when you are so tired (mentally and physically) and your brain is in a fog. I don't have time to get a degree in endocrinology in order to feel better.. although I've learned a lot I need help in knowing how to treat myself.. and look forward to getting help here, b/c I'm very impressed with the posts i've read. I don't know of anything like this in the U.S.

Even though we supposedly have private health care, it seems much the same as yours. What is even worse is that I have to pay for insurance, yet the doc it covers is worthless; and won't order all the tests I need. So I have to go to private labs and pay to have blood drawn and for the tests. Luckily these are getting less expensive, b/c more people are doing this, but it adds up. It's the only way though. Stop looking for help in your healthcare system. You are not crazy. There is help... this looks like a good place to start!

FallingInReverse profile image
FallingInReverse

WELCOME TO THE BOARD!!! I see you joined 2 days ago, and I’m excited because the minute anyone with thyroid issues joins, that is when we finally stop wasting time on our path towards feeling better!

Until you get visibility to the RIGHT blood tests, done with the RIGHT consistent protocol, have the right interpretation of those blood tests, then we are all just absolutely wasting our time feeling terrible. This board will give you the right info on those things.

Read and re read all the answers you got above! Use your best judgement and what you know about yourself, your symptoms. Assume that none of us are doctors, but you will get smarter, and see than many here are smarter than most doctors. Your experience here on this board will clear up so much confusion and start to define a path to diagnosis and treatment. It takes time - weeks and months in between each step. But the hope and peace that come from knowing you are on a path is immeasurable.

Also - it is unbelievable how many doctors actually think we are crazy, depressed, and need anti-depressants. Unconscionable.

Your symptoms are real, hard, limiting, and create feelings of loss and sadness. Anyone who has untreated symptoms like you would have that emotional reaction. So forget anyone who brushes it off like that. I’m sorry your doctor makes you feel like that. Unfortunately it’s more common that it should be. Even worse, if it is untreated thyroid then anxiety and depression are actually symptoms!!!! But the treatment is to get the right thyroid hormone NOT antidepressants!

Also, as we are all in it for the long haul here, you should take a moment and fill out your profile. It helps all of us share more helpful replies.

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