Feeling depressed

[Essexlil]

Hi, both sides of my family have suffered from autoimmune problems, ranging from my dear gran disabled by RA to my mum who passed away from heart disease after years of struggling with overactive thyroid/ Hashimotos. My mums cousin with lupus and many family members with thyroid troubles and fibromyalgia. I have Sjogrens and Hashimotos. What really depresses me is the lack of knowledge in the medical profession for autoimmune disease and also the lack of research over many years for a cure.

[SlowDragon Administrator]

Feeling down & blue is classic sign of being hypothyroid

Did you get your previous blood test results

Has GP increased dose of Levothyroxine?

[Essexlil in reply to SlowDragon]

Hi slowdragon, yes my gp increased my dose by 25mcg to 75mcg. She said as I was in the lower range it shouldn't make me go hyper. I didn't get test results as receptionist had a queue.

[SlowDragon Administrator in reply to Essexlil]

So you will need bloods retested in 6-8 weeks after dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Important to regularly retest vitamin D, folate, ferritin and B12 too

Low vitamin levels are extremely common, especially as you have Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Did you get coeliac blood test yet

Have you tried strictly gluten free diet?

[Essexlil in reply to SlowDragon]

Hi SlwDragon, my GP has told me it takes 3 months for the increased dose to take affect and to go back for a blood test at the beginning of June 😞She does a full blood test for my Sjogrens in the summer so will do the thyroid at the same time. I will go back if I don't feel well before though. I do feel slightly better after 6 days on the increased dose though so don't know where three months comes from?

[SlowDragon Administrator in reply to Essexlil]

Suggest you get FULL Thyroid and vitamin testing privately after 8 weeks then via Medichecks, Blue Horizon or Thriva

June is 4 months away.

Important to get vitamins optimal asap

NICE guidelines advise 3-4 weeks (patients find that's too soon and that 6-8 weeks is better)

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

A coeliac blood test available online for under £20

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

[Essexlil in reply to SlowDragon]

Thank you for the helpful info. I should mention that I'm 63 so I think that's why my GP has taken it slowly, but I am upset by the fact that because on 50mcg I was in the normal range - this was the lower end and I think she could have increased my dose sooner, before I had to go to her because I felt so bad and had gained 10lbs in weight. If I don't feel right in 8 weeks I'll go back and not wait until June.

[SlowDragon Administrator in reply to Essexlil]

Politely insist on vitamin and coeliac blood tests at next appointment

[shaws Administrator]

I can commiserate with you as it seems if we have one autoimmune condition we can get more. I have three at present.

Daugher has R.A (daughter severely disabled) plus 2. I blame the doctor because when she was around 10 and complaining and back and forth to doctor and I then said to him 'my sister has R.A.' he was so angry because I was 'putting ideas into her head' and instead of him checking her blood she remained undiagnosed with flare-ups untill she had a huge flare-up at 17 and had to be hospitalised.

My Mother had P.A. - when she was about 65 the doctor told her that her blood was now fine - she needed no more injections. My siter and I though this was 'great' - little did we know what was ahead when Mother died stomach cancer.

As for Fibromyalgia, one of our Advisers (deceased) also a scientist and researcher stated that fibro was actually due to low T3. This is an excerpt from the following link:-

"My impression is that most doctors and researchers don’t know that too little thyroid hormone regulation of cells in the brain stem and spinal cord can induce and sustain pain. When a hypothyroid patient is under-treated or denied treatment with thyroid hormone (the standard provisions of conventional medicine), and her main hypothyroid symptom is chronic, widespread pain, her doctor is likely to diagnose her pain as "fibromyalgia."

After the fibromyalgia diagnosis, conventional treatment will follow. This will entail various medications that don’t correct the underlying cause of her pain (hypothyroidism) and that are largely ineffective. Through conventional care, her health is likely to deteriorate further over time—partly from her continuing hypothyroidism and partly from the adverse effects of conventional medications. To avert this from happening, I suggest that you and your daughter promptly abandon conventional medical care, and at the same time, get her under the care of an alternative doctor who’ll competently treat her for her hypothyroidism. I wish her the very best "

web.archive.org/web/2010103...

This is the reason we are on self-help groups as doctors and medical professionals appear not to read any Research and diagnose patients without much expertise or prescribe treament which may not relieve symptoms or the patient develops other problems. As for hypothyroidism they don't diagnose upon clinical symptoms any more but prescribe other than thyroid hormones for the additional symptoms:-

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

[vocalEK in reply to shaws]

"As pernicious anemia is an autoimmune condition, people may need life-long treatment to control symptoms. Doctors can treat the vitamin B-12 deficiency. However, there is not yet a cure for the immune system reaction that causes this deficiency to occur." medicalnewstoday.com/articl...

So I guess your mom's doctor believed he had cured her? Gee, maybe we could cure diabetes with just one insulin shot!

[Fruitandnutcase]

I agree, the lack of research / progress into autoimmune conditions is pretty depressing. Sounds an awful thing to say it but I think perhaps some medical conditions are more ‘glamorous’ than others and autoimmune conditions clearly aren’t glamorous.

It’s even more of a pain that autoimmune conditions hunt in packs so some people (like you and I ) end up with more than one.

On the plus side, I went totally gluten free when I developed inflammatory arthritis - yet another autoimmune condition- a few years ago, it reduced my thyroid antibodies (I’m in remission from Graves Disease) and really helped my IBS so that might help with your Hashimotos.

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Janspenc I totally understand the struggles of Hypothyroidism and multiple autoimmune diseases and doctors that can't understand how one affects the other.

[MariLiz]

I agree with you wholeheartedly! I always get the feeling that we are a nuisance to the medical profession. If you try and mention that perhaps there is a link between all the varying symptoms and diagnoses, they just treat you with contempt. An endocrinologist I saw privately wasn’t at all interested in my low B12.

It is totally frustrating, and we end up going to several different specialists at the hospital, none of them interested in the whole picture at all.