Wondering how many are self diagnosed and self medicating?

[cupcakegirl]

Hi everyone. I’ve been suffering from hypothyroidism symptoms for over 10 years now. I’ve requested blood tests so many times over the years - on occasion I was told the results were borderline but mostly just that they were fine. Once I started asking for copies I’ve seen TSH from 1.9 to 2.9. Last year I decided to do a private test and found my TSH was normal but FT4 right at the bottom of the normal range plus T3 and T4 on the low side. I was on a drug that affects the pituitary gland when my symptom started and now think I might have Central hypothyroidism but the GP is having none of it, unsurprisingly.

My symptoms are worsening all the time. Main ones are

- Severe chronic fatigue (diagnosed as ME)

- Severe joint pain and weakness (diagnosed as fibromyalgia)

- Pain like all the bones in my feet are shattered which is making it hard to walk

- Weight gain that’s disproportionate

- Hair loss

- Completely absent sex drive

- Frequently cold

- Palpitations

- Burning Pain in feet and legs

- Hand weakness

- Constant Severe back Pain and altered sensation

There are others but it’s hard to know what’s what.

I’m now at the point where I need to sort this out because I can’t carry on like this. I would like to try treatment to see if things improve. GP refuses. So either I have to see someone privately or I have to find a source for medication myself and do private blood tests. I have toddler twins and I can barely take care of them. We never leave the house. It’s heartbreaking.

Just wondering how many people have self diagnosed and self managed? Would it be crazy to do this myself? I’m so desperate

[SlowDragon Administrator]

First step is to get FULL testing.....this is likely to need to be privately

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Low vitamins can significantly affect Thyroid

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.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 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)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

please email Dionne for list of recommended thyroid specialist

[e-mail]

Come back with new post once you have results for advice on next steps

Central hypothyroidism is considered rare, but may just be rarely diagnosed

[cupcakegirl in reply to SlowDragon]

Thank you - have been researching CH for a while and I gather it is rare, but it seems to make sense for me from the few tests I’ve had done. Wouldn’t surprise me whatsoever if that previous medication screwed up my pituitary gland, it caused me a lot of problems. I’ve also been on opiates longterm for endometriosis and apparently this can also be a factor.

Strangely the last test I did was early morning and fasting and my FT4 was higher and TSH lower than the previous tests I did later in the day so not sure what to do for the best really!

[SlowDragon Administrator in reply to cupcakegirl]

Burning feet is likely peripheral neuropathy

Pain in feet plantar fasciitis - very common when hypo, especially low FT3

Joint pain - associated with low vitamin D.

Post partum thyroiditis can occur after pregnancy

btf-thyroid.org/information...

Essential to test TPO and TG thyroid antibodies

Did you have anaesthetic when twins born?

Can cause low B12 so can pregnancy

[humanbean in reply to SlowDragon]

Burning feet can also be plantar fasciitis :

en.wikipedia.org/wiki/Plant...

It is quite common in hypothyroidism.

I had it for a very long time, and the older I got the worse it became. Once I started to treat myself for hypothyroidism it vanished fairly quickly.

[spongecat in reply to humanbean]

Hi cupcakegirl

As humansays it sounds like plantar fasciitis. It's horrid. I had it before diagnosis and whilst getting my dose optimised. Waking up in the morning and getting out of bed and the excruciating pain of trying to stand up.......

Try these exercises, they really help. I used a tennis ball instead of a foam roller, it and a hand towel stay in my bedside table just in case PF decides to visit again!

healthline.com/health/fitne...

Also these shoe inserts to support the instep and got me walking pain free were a massive help. I used to pop them in my trainers, boots or whatever I was wearing that day. Just the 3/4 length ones (as opposed to full length sole) were completely adequate.....

amazon.co.uk/dp/B00VX9QX5I/...

[shaws]

I remained undiagnosed, despite clinical symptoms. I was diagnosed with other things except hypothyroidism and I also underwent an operation to 'remove a post cricoid web in my throat' - a diagnosis after a barium swallow.

I had nothing of the sort and when I asked 'what was it then' I got no answer but they didn't refund my money.

Nowadays doctors don't know much or nothing at all about dysfunctions of the thyroid gland, except tell us there's nothing wrong and probably I was diagnosed as 'troublesome'. If they take a blood test we've to wait until the TSH reaches 10 (in UK - in other countries it is 3+). A huge difference.

I cried when I self-diagnosed myself by insisting on a blood test form when I was away from home. That was the beginning of another tortuous journey which, thankfully for the internet, I found Thyroiduk.org.uk and step by step am now well.

I buy my own thyroid hormones and get a blood test once yearly now. I am also symptom-free.

We are far better off with advice from members on this forum as most of us have 'been there - done that' and got well. We aren't restricted to having a TSH above 2 or 3.

We can recommend two private labs, both of which do all of the thyroid hormone tests we need. They are home pin-prick tests and blood should be done as early as possible and be well hydrated a couple of days before and make sure hands/arms are warm.

You need a TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Post your results with the ranges for comments upon them. You can also source your own thyroid hormones but no information is posted on the open forum but by a private message.

Your GP should test B12, Vit D, iron, ferritin and folate as all have to be optimal.

[helvella]

For burning feet, you could do worse than read this document:

racgp.org.au/afp/200312/200...

[cupcakegirl]

Thanks so much everyone. I don’t think my foot pain is PF as there’s not really Pain in my heel. It’s mainly the long bone on the outside of my foot. I can’t even touch it. The burning pain is from the knees downwards, in various locations or sometimes all over.

[cupcakegirl]

Going to look through all your suggestions now, thank you