Thyroid antibodies, IBS and hives

[HazelD]

Hello,

I was just wondering if anyone had any suggestions to help me because I am getting confused with all my symptoms and all the tests my GP is running keep coming back negative.

I have had thyroid antibodies for years and been on and off thyroxine a few times depending on my blood tests.

I have had hives for about 5 years, mainly triggered by the sun but been on permanent antihistamines for the 5 years which has controlled them.

I have had IBS which has been worsening over the past 6 months, I was just eating boiled rice, porridge, meat and fish and couldn't even take vitamins as they upset my tummy. I have been tested for celiac disease so many times which come back negative (even though I wasn't eating gluten free porridge). My GP said to eat gluten normally to try and get a positive celiac test but after just 5 days I was covered in hives (as big as a plate where they all joined up), itchy scalp, swollen lips, palpitations so bad I felt faint and general exhaustion and had to phone in sick for 2 days to have bed rest to get over the ordeal. My celiac still came back negative and my GP said she did a full immunology test which also came negative even with the horrendous symptoms.

I have since cut out gluten (I even eat gluten free porridge now) and its completely changed me, I can eat so much more food now which is great and take multivitamins.

I can't seem to take thyroxine at the moment because of palpitations but I feel exhausted and I seem to be putting on 2 or 3 pounds every couple of weeks. My palpitations go away when I don't take the thyroxine , but I really feel I need it, I've only been trying to take 25 mcg.

I also have a lactose intolerance which I thought might be what's causing the palpitations when I take thyroxine. I was thinking of asking for lactose free thyroxine but it will also need to be gluten free but with no official positive blood test relating to food I am not sure I will be able to get anything expensive.

I want to see my GP and say to just look at all my symptoms as one and see if there is something else to look at rather than keep trying endless tests that keep coming back negative.

Has anyone got any suggestions that might help me to go down a more structured route with my GP?

Many thanks

[shaws Administrator]

I'm sorry you seem to have problems, either being diagnosed, or on and off thyroxine.

Can you get a print-out of your most recent blood test results, with the ranges and post them on a new question if you don't have them today. Members will then comment upon them.

I always had severe palpitations when taking levothyroxine and I improved when 10mcg of T3 was added. I now feel well on T3 only.

If you are hypothyroid but GP hasn't diagnosed you only upon your TSH result alone, your stomach problems might be due to low acid (common in hypothyroid patients).

sott.net/article/222698-Goo...

chriskresser.com/the-thyroi...

When your next blood test is due make the earliest possible appointment and fast (you can drink water).Leave about 24 hours between your last dose of levo and the test. and take levo afterwards.

Always get a print-out of blood tests for your own records and so you can post if you have a query.

We have to read and learn if we want to get some semblance of good health back and not rely on GPs/Endos if they only follow the TSH and diagnose on it alone.

[HazelD in reply to shaws]

That's brilliant thank you 😃 I will get a print out of all my recent blood results and post them on here. I will also speak to my GP about T3 tablets too.

Thank you

[Marz in reply to HazelD]

I would wait to see what your FT3 is before talking about taking T3. If your FT4 is good in range - which I doubt - then it could be you are not converting the T4 into T3. GP's are not keen on prescribing T3 and say the Endos have to prescribe. So one step at a time....

Also ask for B12 - Ferritin - Folate - Iron - VitD to be tested - they need to be optimal for you to feel well and for your thyroid treatments to work. Also ask for your Thyroid Anti-bodies to be tested - Anti-TPO and Anti-Tg.

So much to read and learn and we cannot rely on our Docs to be up to speed.

anhinternational.org/2015/1...

Scroll down for the video !

[shaws Administrator in reply to HazelD]

Marz is correct about getting T3 prescribed and I'll give you a couple of links which you can read and/or complete for your GP. (you might eventually find they don't know much more than TSH (as per the guidelines). Read about Free T3 in the first link.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[HazelD]

That's brilliant, thank you so much for all this information, I feel like I've got more to focus on. It's horrible when you feel so exhausted and at such a loss not knowing in what direction to go in.

Thank you again

[ging]

You can try homeopathic Colocynth for IBS