Happy yet Disappointed

[MrsO2510]

Saw a locum go today. He went over bloods and said all clear for Myeloma and PV.😎 Boarderline for autoimmune thyrioditis - won’t give treatments unless antibodies are still raised in 8 weeks. 😞 also wants to test something ovarian to rule out... not a clue what I’m going to tell work as I’m don’t seem any closer to being well enough to go back. Oh and another course of antibiotics for raging throat infection.

[SlowDragon Administrator]

What are current levels of ferritin, folate, B12 and vitamin D?

See you were severely deficient in Vitamin D in Nov

Are you strictly gluten free

[MrsO2510 in reply to SlowDragon]

The only bloods this time were the thyroid ones...Serum thyroid peroxidase antibody concentration 79 u/ml (0.0-75.0)

Serum TSH level 3.0 mu/ l (0.35-4.7)

Serum free trilodothryonie level 5.0 pmol/L (3.8-6.0)

Serum free T4 11pmol/L (7.8-21.0)

Other tests for myeloma:

Serum total protein level 69g/L (65.0-82.0)

Serum albumin level 39 g/L (36.0-48.0)

Urine total protein level 0.12 g/L no range given

Urine protein electrophoresis - trace of albumin only.

Nest tests not for two weeks and not sure but think he’s not testing Vit D for another four weeks.

[Marz in reply to MrsO2510]

So you need those vitamins and minerals tested as mentioned by SlowDragon above - they are the foundations of our health and wellbeing ....

Have you considered having your tests done privately at home through Thyroid UK - see link below ....

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

[Rmichelle]

Hi there im not really experienced to answer your query but could you nit go back to gp and say how dire you feel and say you are not ready to go back, i have been very poorly fir last 5 mo ths and still of work due to being hyper and hashis and now hypo and aneamic my meds are nowhere suiting me again. I know how you feel as i only have 1 month left and back to work but im going back part time and on a phase return.hope you get it sorted.😊😊

[MrsO2510 in reply to Rmichelle]

Thanks for your response Rmichelle, I went off work 28th September with anemia and recovery from viral meningitis... later sicknote were anemia and recurrent chest infections. I’ve never been off work before so I am really struggling but at the same time I have really bad brain fog and would probably be a liability as a head teacher at the moment 🙄

[Rmichelle in reply to MrsO2510]

Yes i understand as ive always worked and been a busy person but having thyroid disease as knocked me off my feet, it is rubbish.

Yes the brain fog is bad, some days i think i have dementia but this is a common sympton, we will get there one day.xxgood luck.😊

[Marz in reply to MrsO2510]

I expect your VitD is very low - hence the infections.

[MrsO2510 in reply to Marz]

I’m on loading doses of Vit D as it was 15. I am taking cofactors too 😷

[Hidden in reply to MrsO2510]

Expect you've been on d3 since you were fifteen? Think d3 is a relatively new discovery and is in fact a hormone. Heloise knows about d3. You can look it up on wikipaedia.

[MrsO2510 in reply to Hidden]

Hi yes it’s Colekal-D3 my blood test in November gave a level of 15 so I’ve been on it ever since.

[Hidden]

You can have a throat infection with thyroiditis. If you are on antibiotics be sure to avoid alcohol as they might alter the absorption of antibiotics. Zinc supplement with vitamins c is good for throat - lozenges or effervescent flavoured vitamin c with zinc from boots are good.

Vitamin k is good for ovaries and b12 is good for thyroid. You might find it settles down after a few weeks. You can get drops for vitamin k online uk chemists.

Tips are to drink Evian or Volvic spring water, and avoid fluoride in tooth paste, and water, as it can damage the thyroid. A water filter maxtra cartridge screens out chlorine from tap water. Avoid Tescos and Asdas spring water as it is recycled tap water!

I gargle using a tiny amount of TCP in water, it helps the soreness. Citric or acetic acid in some fruits and juices can make the throat feel sore so if drinking squash use only a tiny amount with water. Hope you feel better soon mrs 02510.

[MrsO2510 in reply to Hidden]

Thanks gadgrantgg. Will give it a go x

[Hidden in reply to MrsO2510]

I have a good friend who was a primary school head teacher for many years. She became very sick and it turned out that she had Addison’s Disease, Hypothyroidism and Sjögren’s. She managed to get back to work for another decade but she never explained to any of her colleagues because she was proudly stoical. She never joined any forums about Addison’s or read up or took advice from the information provided by relevant charities. She assumed her specialists knew everything there was to know.

She then collapsed and has been severely fatigued ever since, juggling many medications and feeling pretty distraught about quitting her much loved career before she was ready to.

For myself I have Sjögren’s and Hashimotos and was also vitamin D deficient. I think well meaning suggestions about what food or toothpaste or drinking water contains and what supplements to add can be relevant to an extent - if we work out that our bloods are wrong and our chemical sensitivities are particularly high. Otherwise I really feel a little of everything we enjoy and feel good on is best.

But we are all unique. I personally haven’t found that tweaking or eliminating foods or taking B12 have made any significant difference to my poor state of health at all. And focusing on diet and my Hypothyroidism unduly just furthered my disordered eating and stopped me from facing up to my wider autoimmunity and how it was impacting on my life. I kept thinking “okay I’ll try eliminating gluten..” then dairy, then sugar, water filtering, getting fillings removed, hassling dentists and GPs to let me try T3 or re-run tests etc - leading to exhausting and distressing battles with myself and my doctors.

Finally I read up using my own personal history and experiences and then got rediagnosed with Sjögren’s, pushed very hard for a raise in my T4 treatment, excluded Coeliacs myself and worked out my B12 levels were good.

I also worked out that I have had autoimmunity since I was a child due to near death from malnutrition (no one’s fault) as a newborn and being bulk fed semolina with cows milk from 3 weeks old. Once I worked it all out I was able to accept my autoimmunity better, with the help of other communities/ forums, and try to pace myself much better and not to burn myself out.

I do use fluoride toothpaste to prevent my disease attacking my gums and roots any further and I do eat sourdough bread and other types of gluten in small quantities because all the conspiracy theories were making me paranoid and more sick and food phobic.

I was rediagnosed last year with Sjögren’s after being treated with Levothyroxine for many years, then being misdiagnosed with RA following an early menopause, Swine Flu and pneumonia.

Once I’d worked out the historic causes of my own autoimmunity I have then learned to look for my own triggers and not to follow others well meaning advice on how to live my life unless I know and trust them and know that they have been through a similar journey themselves.

I’m under a lot of specialists and never take anything any doctor says as a given - but I do work with most of them rather than as an untreated solitary sufferer. If I don’t like a doctor I politely move on where possible.

For me it’s feeling believed and trusted by friends, family, colleagues and the medical profession that has helped me manage my own presentation of autoimmunity best.

You may find that you are deficient in certain minerals or vitamins and you may well benefit from introduction of Levothyroxine. But for me personally this wasn’t enough - I had to learn more with the help of good GPs specialists - including a dietician, optician/ohthamologist, audiologist, rheumatologist, vascular doctor, neurologist, gastroenterologist and now a good occupational therapist and physio - plus a Pilates instructor.

I hope perhaps my perspective and experience are useful to you. It’s a journey we have to take for ourselves with as much intelligent support as we can find along the way.

[MrsO2510 in reply to Hidden]

Wow that’s quite a journey that you have been on and thank you so much for sharing. Like your friend initially I tried to keep going until I developed tremors and couldn’t formulate sentences - my body basically began to shut down. Probably why it’s taking so long to recover to anywhere near close to being fit to work. I am going to try and track back and see where all the causes have stemmed from too hopefully that will help find a way forward. Thanks again

[Hidden in reply to MrsO2510]

All I can suggest, from my own experience, is that you keep an open mind about what is wrong. Hypothyroidism might just be one of many aspects to what is causing your symptoms. Very best of luck finding your way back to at least relative good health.