Hello everyone! I am diagnosed with hypothyroidism and take Levothyroxine 100mg. I don't feel well at all, but I also have other health problems: lupus, Sjogren's, Henoch's purpura, neutropenia... I have a lot of symptoms and pains that I don't know where they are coming from, but fibromyalgia and depression are to blame. I don't have an endocrinologist and My GP doesn't help me at all. The GP agreed to do blood tests, I will show you the results, maybe you can help me with some advice. vit D -18.
TSH-0.572
Thyroid Peroxidase antibody 448.3
Haemoglobin A12-45
Serum albumin level -49
Calcium-2.27
Adjusted calcium concentration-2.30
Pathology intrinsic factor antibody -0.60
Serum ferritin -11
B12-35
And liver function test, Full blood count , serum folate level,Bone profile si urea+crest+electrolytes it’s abnormal.Thank you!
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all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
For the intrinsic factor, the factor does not show me whether it is positive or negative and tells me that it is only made, but vitamin B12 is 35 pool/L
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
What’s the range on B12 35 (?????)
Highly likely to need LOADING B12 injections initially via GP
Or organise your own
Then going forward will be down to you to self supplement daily
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
As you are Vegetarian very likely to need ongoing separate B12 few times a week if not daily
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
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
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
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.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40 30 to 180
Females 40 ≤ age < 50 30 to 207
Females 50 ≤ age < 60 30 to 264
Females Age ≥ 60 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
I'm sorry for not replying but I'm not feeling too well. The GP just sent me a message that I need vitamin D of 50,000 ui and to take one a week for 6 weeks. Otherwise, I don't know what else I can do because I can't get an appointment until February 14, 2024. I called Surgery and told him that I feel quite bad and that I am very dizzy and sometimes I can't breathe, but he put in the system that I am suspected of covid. It all boils down to covid and fibromyalgia. The problem is that I don't have the strength to go to the toilet.
if your GP will not help you when you clearly need help if you can’t get to the toilet. Then call for hospital help. Or get someone to take you to A&E. they should then do a load of blood tests for you and hopefully you’ll get the help you need. Ask for TSH, T4 importantly T3 bloods aswell as all anaemia bloods available. Are you drinking water and eating healthy??
I keep thinking of waiting until the appointment on February 14 and I don't know if it's good. Anyway, I can't get another GP appointment. I sent an email to my rheumatologist and hematologist. I hope everything will be fine, because maybe it's just a reaction from Prednisolone and Hydroxychloroquine
You should not be waiting 2 weeks with dire B12 and ferritin levels
Also request TSH, Ft4 and Ft3 are tested together
Book early morning appointment and last dose levothyroxine 24 hours before test
Steroids LOWER TSH
Low vitamin levels also tend to lower TSH
Just testing TSH is inadequate
Which brand levothyroxine are you taking
Is it always same brand
Are you taking your Levo correctly
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours
Some like calcium, magnesium, iron at least 4 hours away
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
I take levithyroxine correctly and take it in the morning without food because that's what my GP told me. I didn't have the same brand because that's how they gave it to me at the pharmacy and I didn't know. I am 1.68 tall and 59 KG
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Have you tried calling NHS 111, if you explain about your absolutely awful ferritin and B12 as well as vitamin D then one of their doctors could ring you back and prescribe treatment.
Having suffered all 3 myself at various times I can confirm deficiencies can floor you. You say you've had the intrinsic factor test, frankly this is rather useless, its only accurate in 50% of cases. You can have pernicious anemia and have a negative antibody test.
At the very least they should be investigating urgently why your nutrients are so low. Whether a malabsorbtion/ autoimmune issue, bleeding from your digestive system or heavy periods. This is urgent and you cant wait until the middle of February. Do you have anyone who could phone on your behalf?
Also dont be fobbed off with "everything is down to Fibro". I have Fibro and have lost count of the number of times I've seen a doctor with a new symptom and its been blamed on Fibro.
Its lazy medicine, a convenient scapegoat. I've had Fibro for nearly 20 years and I know what's normal for me in terms of pain, fatigue etc. And I'm sure you do too. As does anyone who copes with a chronic long term condition.
If the breathlessness and exhaustion is a new symptom it needs investigating. My ferritin dropped to 6 so I know how wretched it can make you feel. My concern is that by blaming symptoms on Fibro other causes, potentially serious ones, are missed.
Exact! I don't understand why they say it's fibromyalgia because fibro is a syndrome and not a disease. I called the GP and told him that I can't breathe, that I can't stand up, that I'm very dizzy and he wrote to me in the system that I have Covid. I don't have Covid because I tested myself twice
No, I found out my medical records that I had phoned in and told them I had covid. Not only have I never had it but why would I phone in to tell them I had? Bonkers. I told them to remove it 😂.
Those symptoms you describe are classic low ferritin/ B12 symptoms. I was diagnosed with very low B12, I'm a lifelong veggie as well. Even though my PA antibody test was negative my GP was convinced I had it because putting me on high strength vitamin B12 tablets did nothing.
I was started on loading dose B12 injections, usually 5-6 jabs in a week or two, then a maintenance jab every 2 months. I still get them. It might be this is what you'll have.
There is a Pernicious Anaemia forum on here, they are a very helpful and knowledgeable bunch. Might be worth a look for all things B12 related.
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