So I kept making appointments to see my GP (over the last 6 years) as I was exhausted, felt down, was achy, dizzy, etc etc. And they kept putting it down to me being a new Mum (again 6 years ago) and then on depression and anxiety.
Each time I left feeling let down, defeated and kind of like 'Well maybe this is how everyone feels and I just can't handle it'
This got worse over the past few months, like very rapidly to the point where I was aching so much, had calf pain, agony in my joints, couldn't stay awake as I would get physical pain if I tried, dizzy spells, headaches and then numbness in my legs. The most scary being numbness combined with dizzyness and heart palpitations.
I literally thought I was dying.
I spoke to the GP and explained all of this and was begging for help. I was so distressed and scared. She said we'd start with a blood test and then see how it goes.
I got my results with says hypothyroidism and prediabetes. My GP (a different one to the one who sorted out the blood test) said 'Oh it's hypothyroidism, don't bother Googling it. All your symptoms though are caused by anxiety. We'll do a blood test in 12 weeks'
Obviously I Googled it as I'm not just going to ignore it.
Since then I've had good days, bad days but in general feel unable to cope. Today I have been in bed most of the day. I've not been in work this week as I've been too dizzy, exhausted and achy. But then I am stressing about money which also doesn't help. I need to work but I just can't some days.
I contacted the doctor again as I can't live like this. They will call me on Friday.
I'm so miserable. I have so much I want to do, so much I want to achieve and just feel like I'm trying to get through the day. I have a pile of washing to sort out, clothes to put away and I need a shower (I haven't had the energy to wash for a couple of days) and ideally a want to go to work. But the thought of even picking up a dish just makes me feel like crying. I don't know what to do.
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Hibichan
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Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Standard starter dose of levothyroxine is 50mcg
Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2
Most important results are always Ft3 followed by Ft4. When adequately treated Ft3 should be at least 60% through range
Important to regularly retest vitamin D, folate, ferritin and B12 too. These frequently are low and often need improving by supplementing
do you have any actual blood test results? if not will need to get hold of copies.
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
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I was diagnosed about three weeks ago and haven't been given any medication or any advice. Just told to have another blood test in 12 weeks and that's that.
This is the first time they've tested me for it. They always just go 'Meh, it's depression' and leave it at that. They never did any blood tests. Should they not be doing a scan on my neck or anything. I had thyroid issues when I was about 14 and remember having tons of blood work, scans, X rays, etc. But then nothing and now I'm 34 and here we go again lol
Important to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
Vast majority of hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Iodine should only ever be taken if tested and found deficient
Multivitamins are never recommended on here. Too little of what we do need. And usually cheap poorly absorbed ingredients.
As your dad has coeliac disease you should automatically be tested
Autoimmune thyroid disease, aka Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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
While still eating high gluten diet ask/insist GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT.....If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
I might be tempted to persuade the GP to do a thyroid antibodies test. If the result was positive then you are hypothyroid caused by autoimmune disease (Hashimoto’s) and it won’t go away, so you’d be in a strong position to request starting treatment- no need to wait twelve weeks.
If GP won’t do any testing any sooner you could do a private blood test that included the antibody tests - then if it was positive show your GP that the diagnosis is there in the blood result.
Failing those options, or a private test that didn’t confirm Hashimoto’s, I’d follow Slow Dragon’s good advice and also pressure the GP to test as soon as possible - push the receptionist to book a test in, say, eight to ten weeks time - even ten weeks is sooner than twelve weeks.
Sorry you are feeling so poorly, but hopefully you will get treated soon.
Thank you so much for your advice. I have an appointment on the phone with my doctor today so will ask. I really appreciate all the help as otherwise I get all muddled on the phone and don't know what I'm asking for or what I need and get fobbed off time and time again.I have a little notebook at hand to write key words in to remind me to ask. I get a little nervous and forget what I'm doing most of the time lol.
My doctor is going to run more blood tests, check for celiacs and then was like 'Well you know, it's probably not your thyroid causing your symptoms as it's not been going on long enough'
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