Can people please let me know if your thyroid blood tests are very normal but you have severe hypothyroid symptoms

[savery8753]

Hi All

I have been posting a few times over the past few months, Im still trying to get a diagnosis under the NHS and failing miserably. My symptoms are so severe now, Im really worried

I have had blood tests and the most recent ones are as follows:

TSH 1.3 (0.35 - 5)

T4 14.3 (9-19)

Free t3 4.3 (2.9 - 6.1)

Thyroid antibodies and Pernacious anmeia test lost, having to go back

My question is, I am massively deteriorating fast, very swollen tongue, palor, swollen face, very swollen legs and excruciating hip pain both side breathless (getting worse) at times, morning stiffness in legs and arms, cant climb stairs easily , gained 2 stone in a year and eat very healthiiy, swollen eye lids, numbness in my fingers, swollen neck, deathness, very bad tinutus, bad plaque even though I clean my teeth well and a million more symptoms

I am completely gluten free now, this has not helped in anyway.

Ive changed my gp, who saw me yesterday but was told my 20mins were up and to come back in january, I dont think Ill last until then.

Please can anyone help me x

[Nanaedake]

In your previous post you were going to be checked for pernicious anaemia. Given your symptoms of swollen tongue and tinnitus this needs to be ruled out. Insist on retest or get test done through online lab, Medichecks or Blue Horizon along with other vitamins, folate, ferritin and vitamin D. You also need those thyroid antibodies results.

You may get good support to progress this via the Healthunlocked Pernicious Anaemia forum so post your query there too.

[lc1973]

Hi

Was it the private Endo who originally diagnosed you as being hypothyroid and if so are you able to obtain what your TSH, FT4 and FT3 (if taken) were? I know when i first got diagnosed my TSH was nearer 10 and i had antibodies. Just out of interest why has your Endo told you to stop taking levothyroxine? I think some of your symptoms are perhaps B12 related or Pernicious anaemia which you say your GP has lost? Presumably you will have this tested again very soon at your doctors? What did the doctor suggest who you saw yesterday?

[SlowDragon Administrator]

Can you order your own private blood tests?

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available. 100's on here have to get tests privately, NHS refuse to test FT3 in most cases

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 be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results

[Jen15]

So sorry to hear you are struggling to get a diagnosis. I was told for over a decade that I was not hypothyroid (despite having multiple symptoms) because my TSH blood test results were "in range".

Eventually a consultant told me that the NHS range for the TSH test is ARBITARY and that some people need to have a TSH considerably outside of this range to feel well. (For example I need a TSH of 0.1 or else I feel very unwell.)

I have read that an estimated 5% of people with thyroid disorders need a TSH outside of the standard NHS range defined as "normal" in order to feel well.

I had to refer myself to see an endocrinologist to get diagnosed and treated.

You do not need be referred via a GP to see a consultant.You can just ring up and book. Get a copy of your relevant notes and blood tests from your GP practise to take along with you when you see a consultant.

Thyroid disorders can be complex and in my experience GPs just don't have the knowledge to deal with thyroid patients who are in that small percentage that need more expert help. If you aren't getting the help you need at GP level please consider seeing an endocrinologist who is more likely to have the expertise you need. Best wishes.