Hello, this is my first post so please bear with me...
I was diagnosed with underactive thyroid almost 11 years ago after the birth of my child. I was severely underactive and couldn't stay awake. Long story short my periods gradually stopped and I was suffering with flushes, hair loss, fatigue dry cracking skin, low mood etc. GP refused it was menopause as my age was 34. Fast forward to 2021 I have finally seen a meno specialist who has advised the reason for premature ovarian failure is because my thyroid was insufficiently treated. No matter the dosage of levothyroxine I take from 25mg to 125kg over the years the GP tells me my thyroid is fine as I am in the normal range of TSH. I am so unwell, I have lost 2 jobs, a marriage breakdown and im getting more and more unwell as the months pass by. The worst of my symptoms is extreme thirst, painful esophagus, somedays it feels as if it is caving in and im wondering if this could be connected to thyroid? Thankyou
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Bellabootoo
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Do you always get same brand levothyroxine at each prescription
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you currently taking
Do you know if the cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
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.
In reality many GP surgeries 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far too often only TSH is tested
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Dry skin and hair loss are symptoms of low progesterone, progesterone drops after giving birth because of this some women develop hashimotos, the ovaries will make more progesterone in time and things should go back to normal so levothyroxine shouldn't be prescribed in a hurry because it blocks and replaces your thyroid system which effects your hormones
I’m so sorry to hear what a tough time you are having.
Like so many members, you will be empowered by taking your health into your own hands by following advice here. I would definitely encourage you to test your thyroid levels & antibodies privately, along with key vitamins (if you are able) and aim to get folate, ferritin, B12 and Vit D optimal.
I only began to feel well when my TSH was below 1 and my key vitamins improved. Going gluten free also helped improve many symptoms, but one thing at once….. you need to find out & post your most recent thyroid blood tests (with ranges in brackets- as labs can vary). Remember we are here to support each other, so do keep posting & asking questions. Very best wishes to you.
In order to say anything constructive we do need to see the relevant blood tests and ranges as already detailed and there are private companies who can run these for you if your doctor declines to help you.
My doctor refused my request, it seems quite common, so don't be further upset.
Just move on yourself and you will find help and support from forum members and your blood tests will be explained in detail when you have your results back .
Simply start a new post with the results and ranges and you will be advised of your next best step forward and this is what we all do, as we start of our climb back to better health and well being.
The private companies are listed on the Thyroid uk website which is the charity who supports this patient to patient forum. Commonly called a ' thyroid bundle " it's around 10 blood analysis and some companies offer a nurse home visit to draw the blood for you.
Try and arrange an early morning blood draw, refrain from taking your T4 - Levothyroxine for 24 hours and fast overnight, just taking in water.
Refrain from taking any supplements for the week prior as sometimes biotin can effect results and we also need to know how much of anything you body is holding onto rather than what you might have supplemented the previous day.
I'm sorry you haven't found the help you rightly deserve, but there is something " amiss " as there are now over 119 thousand people registered on the Thyroid UK website all of whom are seeking help and advice, so, we can't all be wrong, and you are now in very good company, as having " been there " we have a better understanding of how to help you get better and be " you " again.
Take good care, and we look forward to trying to help you in the future :
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