Am I insane? Or is my body shutting down?

[BabsLito]

Hello Thyroid support community

My name is Babs and I am part of a family in which the females suffer from Thyroidism related issues and lupus. Since my teenage years that I been feeling different but I thought everyone felt the same things. The spectrum of my symptoms is immense:

Early signs: depression, disliking the cold, weak hair and nails, tiredness.

Newer sign since late last year and progression: exhaustion waking up everyday, slow and delayed though, forgetfulness, shivers and aversion to cold, fits where I go really hot and the sudden and then cold out of the blue where ill shiver uncontrollably for 5 to 10 minutes with respiration slightly laboured that only stop once I feel warmer and calmer, severe depression with crying our bursts that last hours, rashes at the bottom of my legs and shoulder, swollen ankles at night, thirsty, headaches that make me not want to look at light, dry cracking lips that won't be better, stiff and painful neck, tiniest bump on my thyroid area. 33C to 35C normal body temperature. Overall feeling of slowing down and shutting down and brain fog

If this doesn't sound like a thyroid issue I don't know what does. I've been researching and going through my family's medical history but the doctors don't seem to think this is as serious as I feel it to be and I am scared I can't control my body.

As things progress and escalate through the years I am now 25 and finding it hard to want to live under all the symptoms and mad health roller coaster I have been on and I need help. My blood tests don't fluctuate into dangerous hypo levels a lot but I have all the symptoms 3 fold. I need help, I am desperate and I feel like no one either believes me or wants to dig deeper. What should I do? Where do I go? How do I do this? I have no plan left and all. I have is a shutting down cold body with new symptoms and no where to go. So I am coming to you. Can you help in any way?

[SeasideSusie Remembering]

BabsLito

First thing to do is post your test results, with reference ranges, so we can see where your levels lie. For a full picture we need to see:

TSH

FT4

FT3

Thyroid antibodies - Thyroid Peroxidase (TPO) and Thyroglobulin (Tg)

and because low nutrient levels or deficiencies have similar symptoms to thyroid issues, it's important to also test and post results/ranges for:

Vit D (also give unit of measurement)

B12 (also give unit of measurement)

Folate

Ferritin

Once we've seen these results we should be able to help you further.

Please tell us if you take any supplements at the moment or any medication for other health conditions.

[BabsLito in reply to SeasideSusie]

On it! Will make a new post adding those in. Thank you so much. Even this reply feels like a win.

[fuchsia-pink]

Hi Babs

Welcome to the forum. I'm sorry you are going through such a miserable time. As SeasideSusie says, if you can get full blood testing, the lovely and knowledgeable people on this forum will be able to help.

If you're not too familiar about thyroid matters, read some of the other posts and answers here, and have a look at the Thyroid UK website, and helvella 's excellent glossary [pinned on the right]. We need to understand this horrible illness ourselves, as a lot of doctors only have a sketchy knowledge - it's barely covered in their training. Information is power!

[BabsLito in reply to fuchsia-pink]

Thank you soooo much for your help. This feels like a win already. I am now taking care of getting those measurements

[SlowDragon Administrator in reply to BabsLito]

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

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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...

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results

[BabsLito in reply to SlowDragon]

Thank you soooo much everyone. I will be updating everyone soon.

Will be following each of the advice carefully as well.

[madge1979 in reply to BabsLito]

Keep up the momentum Babs .. 👏👏empower yourself ... and learn all you can about how Thyroids work.

Best of Luck ..

Mx🌹

[BabsLito in reply to madge1979]

Thank you guys! Honestly everyday I come here and I get the inspiration I need to keep going and not give up or think I'm crazy. I'm learning oceans through this community

[madge1979 in reply to BabsLito]

You are NOT going crazy !

But when you are sufferIng the symptoms you've had .. and we all know them so well .. you most CERTAINLY feel like your going insane.

.. to be sure !

When I found this site I was on my knees ..

I couldn't find the energy to live

.. now with the help of the amazing people on here .. I'm Euthyroid

.. and loving my life again .

.... just as you will .. very soon

.. but keep on track and don't be content to take the word of medics who know nothing of your disease ..

find the answers and take them to them as proof .. respectfully of course ..and you hopefully like me will get their co-operation .. if not !

Join the many who look after their own health .. there are many of us here ...to help guide .

Best of luck Luvvie

Mx🌹

[BabsLito in reply to madge1979]

I'm not giving up guys and will be keeping you up to date. Thank you for welcoming into your community and guiding me through this crazy journey.

I am so happy to see many of you, like yourself are getting through this and learning so much from it. I will get there with your help.

In the process to Co-operate with the doctors and search for my own way into resolution. 💚

[BabsLito]

I have contacted my doctors for the information I required and after a small conversation where I explained why I wanted to know these blood tests they agreed to send them to me. After a short while having this conversation my doctor's office calls me with a new doctor on the phone, probably worried that I was worried about this. My new doctor said some of the markers I was looking for had not been tested for and why I felt I may suffer from a thyroid related issue if my other bloods where firstly Sub-clinical and then within rage. I explained everything, she said she wanted to test me for these markers I asked and that she would investigate my case which I found really helpful and reassuring for now, she gave me a plan and explained that I can't have antibiotics in my system when I do the next blood tests (have had 2 skin infections and 1 urinary this year already.) because this raises one of the markers potentially hiding hypo.

I cannot tell you what just speaking to you guys has helped, its moved things along and gave me a chance to support my communication with evidence and genuine cause, I would otherwise be still quite lost.

Thank you.

Will create the new post with all my bloods as soon as they are made available to me.