10 months ago, I was admitted to hospital with breathing difficulties, and was on oxygen for over 2 weeks. That basically was the start of my nightmare, as i never seemed to recover,I only developed new symptoms. Chronic fatigue (I literally slept for 18hrs a day) , I was ever so cold, even with 100 layers of clothing on, and just by chance 1 day, I was seen by an endocrinologist at a hospital appointment. He did some bloods & it showed my tsh was 101.5, t4 0.3 & t3 0.7. Ferratin levels were 6. The doctors exact words to me were "No wonder,you feel so shitty, it's as if you have no thyroid at all. He started me on 100mg of Eltroxin, with no effect after 2 weeks on bloods, he has been gradually up'ing the dose every 3/4 weeks & I'm currently on 275mg. For my Iron levels, I'm on iron injections every 2 weeks & take 50mg orally everyday ( which is also not absorbing into my body) . In the mean time, I've developed, every symptom that goes with an under active thyroid apart from hair loss & depression. And it has damaged my heart along the way, but cardiology won't touch me, until my thyroid is under control. I must add, I have been tested for coeliac disease which was negative & have taken Eltroxin at different times of the day to see if that helps with absorbency of the drug, but nothing seems to work. My endo did stop Eltroxin 4 weeks ago to go down the route of trying to kickstart my t3, but I had an awful reaction to the drug, so back on eltroxin I had to go. I really am at the end of my tether at this stage, with 4 children & a husband, I just want to get back to the "old me". I must also point out, I do also have the genetic blood disorder mthfr,& I am 36 yrs old. I would really REALLY appreciate any advice at this point. Thanks for listening.
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suexxxxxx
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You're having a terrible time. Do you know what your thyroid levels are now?
Although your coeliac screen was negative it is not a very reliable test and it's possible that you have gluten intolerance or gluten sensitivity and might benefit from trying a gluten-free diet for a few months as it may improve absorption. It sounds as though you may have a malabsorption issue and may benefit from a referral to gastroenterology to be checked.
Your endo sounds helpful and should perhaps consider whether your MTHFR impairment is causing resistance to thyroid hormone.
Research has shown night time dosing with Levothyroxine to increase absorption and lower TSH. For maximum absorption take Levothyroxine with water on an empty stomach, 1 hour before, or two hours after food and drink, 2 hours away from other medication and supplements and, 4 hours away from iron, calcium, vitamin D and oestrogen.
Hello Sue,
Welcome to our forum and sorry to hear of your ill health.
Thyroid meds will only work when the body has the correct meds in the right amount, sufficient cortisol levels, optimal nutrient levels and a healthy gut.
275mcg is a high dose of Levothyroxine and if you are not converting, the unused hormone T4 will make you feel worse. When this happened to me it made my heart bang and jump all over the place.
I would discuss with your endo the possibility of reducing the T4 and adding back a small amount of T3 to encourage receptors to open and then concentrate on nutrition, nutrition, nutrition inorder to get your levels back up.
If you have methylation issues you will need to look into a B12 deficiency as well as thyroid hormone resistance. Make sure you have an "active B12" test.
Also have you been tested for thyroid antibodies TPOAb and TGAb?
The body is resilient so although at present you feel very ill, with the right treatment you must believe that you will get better.
A good read is 'Your Thyroid and How To Keep It Healthy" by Dr Barry Durrant Peatfield. It is good to educate yourself as thyroid issues are life long and knowledge is power.
Is an "Active B12 test" different from the serum B12 test? I did not know there was more than one, so wonder if my GP tested me for the most appropriate one.
Yes, a serum B12 blood test measures both active and inactive B12 circulating in the blood.
Holotranscobalamin represents only 10-30% of the Vitamin B12 that is actually taken up and used by cells of the body.
Neither my GP or haematologist had heard of this test so I have ordered it privately from Blue Horizons. If it is not available in your area, then the chances are your GP won't have heard of it either.
It is available on the national health service at the Nutristasis Unit at St Thomas' Hospital in London. Another member has since said that if you can't travel to the hospital, you can send your blood sample for analysis but you need a doctors letter.
I plan to use this department if I prove positive for a B12 deficiency and my GP won't recognise Blue Horizon results.
I am sorry you are in such an awful place now. I suggest to start healing guts by going on paleo or autoimmune protocol diet and take probiotics. Healing guts will help you absorb much needed nutritients. Also on top of the other two advice above, I found doing a htma (hair tissue minerals analysis) extremely useful. It's a nasty circle where mineral deficiency cause a whole range of health issue which then contribute to minerals deficiency. Hope you will feel better soon.
Have you had any dental work done within the last year or two? Also, if I may ask, how have your menstrual cycles been - having any difficulty in any way with the monthly cycle?
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