I am in a tricky situation. I am a celiac and have For 2 years now. Everything was well until I was put into levo 50mcg things got worse Feb 2020. Accord has confirmed that they can't guarantee the medication being gluten free and cross contaminations. This explains a lot why I've got worse as my Villis are flat. The worse I am going thought atm is my hairloss is so bad.
Without judgment please has anyone tried a different brand? Or supplents? In my blood tests I've noticed that my t3 goes over range very 6/8 weeks tsh and T4 in range. I've had 3 consultants since Feb 2020 and all have diagnosed me with different thyroid terms. All my vitams d, b12, zinc, iron ect all within range.
My blood tests results below:
March 11 2020
Tsh 4.89 range 0.3-5
T4 15.1 range 7.9-16
T3 5.7 range 3.8-6
April 11 2020
Tsh 4.56 range 0.3-5
T4 12.8 range 7.9-16
T3 6.6 range 3.8-6
11 June 2020
Tsh 3.2 range 0.3-5
T4 12.8 range 7.9-16
T3 5.2 range 3.8-6
28 July 2020
Tsh 3.23 range 0.3-5
T4 14.1 range 7.9-16
T3 6.0 range 3.8-6
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Ela_peraj
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When you say that your vitamins are in range, do you have the actual results and ranges?
What vitamin supplements are you currently taking?
Vitamin D
Folate
Ferritin
B12
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
We need OPTIMAL Vitamin Levels...not just within range
I don't know exactly the figures but they said within range. Yes sorry that's what I mean as in range. I am on vit d, folic magnesium, collagen, ferritin and b12.
I leave 24hrs before doing bloods without levo as well. Yes they are done on empty tummy early in the morning.
You are legally entitled to printed copies of your blood test results and ranges.
As someone with coeliac disease you are likely to have low vitamin levels ....low vitamin D and magnesium very likely unless supplementing at high dose
Many members find supplementing magnesium beneficial.
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.
Ferritin needs improving to at least around 70. Best way is to increase 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.
Thyroid disease is as much about optimising vitamins as thyroid hormones
it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be more beneficial than just folic acid v
This can help keep all B vitamins in balance and will help improve B12 levels too
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 or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
With such low B12 result taking a B12 supplement and a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
My Villis are flat is where I am losing a lot of my vitams and minerals for sure. I am going to make sure I'll take all of these but I am taking some. Probably need to check the units per day. This is what I am actually not sure how much we would need to each one. If can guide me that would be amazing.
I looked up if their are any gluten free thyroid meds and this is what I found.
Gluten-Free Thyroid Medications
Levothyroxine (Lannet brand only)
Nature-Throid
Tirosint
WP Thyroid (formerly Westhroid Pure)
The following medications do not have any gluten-containing ingredients, however, they are not tested for gluten content and cannot be certified as gluten-free:
Levothyroxine (Mylan brand)
Armour Thyroid*
Levoxyl
Synthroid
Cytomel
*Note: Armour does contain sodium starch glycolate, which can be derived from wheat or corn.
Pharmaceutical companies manufacturing medications in, and for use in, the UK, adhere to strict practices and tolerances, meaning their products can be classed as gluten-free. The fact that they might not wish to officially say this to an individual is probably simply to protect themselves in this age of litigation. My coeliac daughter takes all prescribed brands of levo and other medications with no problems whatsoever, and her endo has never warned her against any in particular. In other parts of the world this may well be different. Your endo needs to address what, if anything, is making your coeliac condition flare, despite an obviously strict diet, and also, your high FT3 on a low dosage levo. There may well be other factors behind things that are currently occurring, and your endo needs to do some investigating. Hope they can find some answers for you.
Sorry if I sound silly. But being on levo or having thyroid issues make celiac worse? I had a stomach camera test and showed Villis are flat. I was so shocked by it. I was discharged in Oct 19 from gastro dept as blood test where getting better. Feb 20 started levo. That's when things got bad.
In terms of the t3 going up do u know why that could be??
Not silly at all! Don't forget that your villi can take up to a couple of years to completely regenerate, so give it time. As to your question, no, hypothyroidism does not affect your coeliac disease. A gluten-free diet completely controls and stabilises CD, which is only affected by the physical ingestion of gluten, and nothing else. My daughter, now in her late thirties, had been coeliac for many years before being diagnosed with hypothyroidism during one of her annual checks, which screen for other auto-immune conditions, not just the coeliac antibodies. A subsequent ultrasound showed she had Hashimotos which had already caused considerable damage to her thyroid, although she had had no hypo symptoms. When put on levo by her endo her thyroid levels quickly normalised, and her GP regularly checks to keep them optimal.(lucky her!). She leads a busy life, with two young children and a high-powered job, managing everything very successfully. Neither condition, nor the steps needed to manage them, have affected her ability to lead her life as normal, apart from the diet restrictions, which can prove awkward at times. She has beautiful long, thick hair, too, which I greatly envy! I am sure you will be able to adjust to your conditions, too, just take it a step at a time, and hopefully you have a helpful and understanding GP and endo.
◾ The vast majority of medicines prescribed by your GP are gluten free
◾ A very small number of medicines contain wheat starch which contains low levels of gluten. Wheat starch is one of many ingredients so even when wheat starch is used, the overall gluten content of the medicine is very low
◾ In most cases, an alternative medicinal product can be prescribed which does not contain wheat starch
◾ Sometimes medications can cause side effects that are similar to symptoms that occur after eating gluten. Speak to your GP if you have any unexpected side effects
◾ Where wheat starch has not been used in a medicinal product, the product can be regarded as gluten free.
Your blood results are strange because your TSH is really quite lively and is encouraging your thyroid to churn out more thyroid hormone (when your serum t3 is already high). Given that you're on Levo, it's a little surprising, because your TSH should be a bit more suppressed than that. Now, it could be that you have a few things going on here - malabsorption issues (very likely with celiac) which means that your Levo and minerals and vitamins could be struggling to get absorbed setting your whole system 'off'.
- very low cortisol is allegedly known to do this 'T3 pooling' in the serum and stimulating TSH. Definitely something a proper endo must look into in the rare case it's something like Addison's although you don't sound as though you've got those symptoms.
- another autoimmune illness, possibly effecting the liver and not recycling your blood effectively.*
This definitely warrants further investigation, sorry I don't have any obvious answers, but as others have stressed it's very important to know your vitamin and mineral levels, full iron checks, antibodies and, in your case possibly a liver function test. Low vitamin D, for example, can play havoc with our hormones. Also hair loss is very often due to mineral imbalances, excesses or deficiencies - iron or possibly zinc / selenium issues.
* Some liver problems can present with weird thyroid results, so your GP should give you a proper liver function test.
Hiya. I was initially told it could post patrum thyroiditis. I was hyper for 2 months then went to hypo that's when they done this tests as well
Anti thyroid peroxidase >1022 IU/ML >9
TSH Receptor Anibody <0.3 IU/ML 0-0.9
My cortisol in Jan was very high up and is now close to 200. I remember on one of those tests above stating about associated with autoimmune listed a few including Addison. To be honest I have so many other symptoms that I am now sick an tired of my body now. I will request a copy of my vitamins as well that have recently been done.
A Hashi's swing will occur with raised antibodies and the thyroid will dump a lot of hormone out. This happened when you were hyper. If you feel hypo now with hypo symptoms e.g. hair loss, but have high t3 in your serum - your cells are ignoring this and just not absorbing or using that t3 properly and it's just sitting there in your blood doing nothing. This is called 't3 pooling' but it's not very well understood. It does make logical sense that something other than just the thyroid is faulty, which is why I was speculating about the liver and minerals and Vitamin levels.
Seeing as you cannot tolerate gluten, do you find casein (in milk) to be problematic as well? I can't do with either.
Oh wow thank you for explaining it. I am hopping it's ppt and maybe my thyroids are trying to work. Had ppt with my 1st child and was hoping it will go after this one (2nd child) as well. Did know liver has a part in this.feel like falling apart.
Please note that Tirosint and Tirosint-SOL may have different names outside the United States. Please specify with the international pharmacy that you are requesting Tirosint Gel Capsules to ensure the proper product is ordered.
For any other questions, please contact IBSA Pharma by phone at 1-800-587-3513.
My mum has extremely reactive celiac and she has done so much better on Tirosint but she is in the USA. Unfortunately, you can't get it here in the UK (at least not on the NHS). It's so frustrating!
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