Hi I'm hoping to find some guidance, and it would seem that the people who have these diseases/disorders are alot more clued up that the Dr's diagnosing.. or not. If anyone knows of a good endocrinologist based in Leeds it would be great to know who so I can ask to be referred.
My story is that I've felt like crap pretty much since I was twelve, I have runs of feeling fine for months and then I get wiped out with exhaustion, muscle/joint pains, and sometimes I don't leave the house/bed for months at a time. I was always told that I had depression and I got diagnosed with pcos in my late teens and that's what my problem was and to pretty much deal with it myself.
The list of symptoms I have is long, ranging from constipation, hair turning grey at 11, pulling muscles/cramps, sore hips, knees, fingers, horrendous periods/fainting, but the worst is the shear fatigue.
It was only reading about Liam Gallagher having hashimotos and how it's affected him that I though christ that's like me! I'd never heard of before so I did a little bit more research, my Dr wouldn't test for antibodies so I had them done privately via blue horizon. I've just gotten the results back so I thought I'd post them on here to see what people who are familiar with blood results thoughts were, before I take them to my Dr. I should say that I did eat breakfast and have a cup of tea before the bloods were taken, not sure how much this effects results.
Any insite at this point would be greatly appreciated.
Thanks
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Rosieunwell
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Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
SlowDragon and the other admins were instrumental in me regaining my health. If you want a lived experience to read just click on my face. I relate to much of what you have told us. Well done you for realising they don’t know much. Too wide a remit impossible to learn enough to be effective, coupled with poorly written guidelines based on poorly conducted research, much of which is provided by the pharmaceutical companies making the medications. POACHER GAMEKEEPER. Good for you having critical thinking. 😊👍
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Amazing 😄, I will at ferritin patches and but k2 , but what is all this stuff when out of balance it is just watching over it and patching it. Still it's phenomenal SlowDragon to give do much data thanks .
As others have pointed out, Vit D, folate and iron are all low. B12 in lower range also. All related to thyroid function. Once thyroid gets fixed and body recovers (may take some time - like a year or so), may no longer need supplementation. Till that time, need to supplement all of these. For B12, best to take a few shots and then once-a-month shot. Don't go by B12 serum tests once on any kind of supplementation, as it will come high because of the supplementation and not because it is going into the cells.
Vit D deficiency can cause thyroid problems and fixing that can often improve thyroid function.. It is very low for you. Need to supplement. Take 60000IU/ week for 2-3 months and then can be reduced a bit.
Of course, your FT4 and FT3 are very low, so need thyroid hormone replacement therapy.
Where can we get T3 ? I'm so tired to ask endocrinologist as they don't do it can we get online ? Is folic acid better taken separate than in a multi ?
I have no idea of T3. I have milder hypothyroidism and 50mcg Levo works well for me. You can try that first, and if you still have problems, can add a bit of T3. I am not an expert in it, so please ask others.
Regarding folic acid, it can be either in a multi-vitamin or separate. Take 1-5mg/day. After some time, it can be reduced a bit.
I have a mallen streak, that white patch at the front, in the parting. Before diagnosis I developed a white patch at the back of my head as well. Recently my boss commented on the patch at the back, which I had to point out had gone, the streak at the front is much less visible now too.
I did do a search a while back, which brought up he connection between white patches and thyroid, but can’t find the links I found back then. But here’s a couple just for fun reading….
Request GP to ensure you do not have Pernicious Anaemia before taking B12 supplements.
My mother's GP stopped her B12 injections telling her she needed no more. Unfortunately, due to GPs request my Mother developed stomach cancer and died.
I also have this condition and get monthly B12 injections as normal dose is usually quarterly.
All I know is that's like my story but I just got worse and worse and worse and then my bladderr n bowel also as well as the symptoms u mention v well explained also I have Ords thyroiditis or hashimoto thyroiditis it's make me feel cold shivering blue extremities and tired achy I fell asleep anywhere sometimes and other times wake after few hours it's like restless hell.
In non-pregnant people, officially, you generally need 2 results approximately 2-6 months apart of an above range TSH but below 10 and a T4 in range before a GP may consider a trail for Levothyroxine treatment and diagnosis of subclinical hypothyroidism. The raised antibodies indicate that the reason for the hypothyroidism is due to autoimmunity. Often called Hashimoto, or Autoimmune Thyroditis, or simply Underactive Thyroid.
You are also deficient in folate, you ferritin appears to be in the low side and I can’t quite grasp the B12 result as I can’t see the range in the picture.
I would not hesitate to go to the GP and request a test for TSH, FT4 and FT3 (they may or may not do the FT3) and definitely the antibodies TPO test. I would also request they check key nutrients.
The test needs to be done as early as possible between 8-9am and you must fast before the test.
Edit: they are more likely to treat once they ascertain antibodies status when subclinical.
I will put my results I got them printed on here or on a separate page what would you like I will take photos of them? I need to see if I can do anything as it's so much worse this winter with menopause at 42 43 years old. Thanks
I've bought iron tablets will buy bit D n K tablets the FSH is not working the blood levels are sick and in terms of general but that has been 30 odd years bloods out even platelets and phosphorate and 2001 I was hashimoto diagnosed on T3 for a while and T4 70mg since 2011 that's the picture
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