I recently joined Healthunlocked and thought this would be a good time to to introduce myself to other members and tell a little about my problems.
I have Hypothyroidism (diagnosed at 21, now 31) I had to be placed on a high dose of Levothyroxine as the GP could not get my levels down. Ended up on 150mcg in a very short time and had to just plod along.
In 2016, I developed excruciating shoulder pain and Pompholyx eczema on both hands and feet. By the beginning of 2017, I was feeling very unwell and had to go back to the GP, where my Levothyroxine was raised to 175mcg, then down to 125mcg, up to 137.5mcg (self medication on the last one).
I was getting symptoms such as acne, hair loss, shakes, chronic indigestion, feeling more than my usual tired and cold self, weight gain, etc. After some research I was sure that I might have Hashimoto's, but the GP refused to test for antibodies.
So I decided to do a home test using Medichecks.
TG Antibodies were in the 800+ range and TPO antibodies around 135. I was referred to an Endocrinologist who refused to see me, but stated that I did have Hashimoto's, and although my levels were out, this was due to either no compliance (not an issue) or non absorption of T4 to T3, and I should continue as normal with my Levothyroxine.
A recent test showed my antibodies have increased (TG 1136, TPO 175) and my T3 is in the lower end of the spectrum, showing that I am not converting the T4 to T3 properly.
Another referral to a different endocrinologists, proved just as fruitless.
After more research and deliberation, I have decided to try and strike out on my own.
I found a private GP who is willing to prescribe NDT (Nature Throid), but I will have to pay a monthly direct debit for the prescription, pay for my own blood tests and medication.
This is going to prove rather expensive.
Could some one possibly Private Message me about where I could obtain Nature - Throid without a prescription?
Have you adopted a strict gluten free diet and are you supplementing with selenium l-selenomethionine 200mcg daily as these can help reduce the antibodies, as can keeping TSH suppressed.
Did you know that Hashi's often leads to gut/absorption problems and can result in low nutrient levels or deficiencies?
Have you had vitamins and minerals tested:
Vit D
B12
Folate
Ferritin
It would be a good idea to address these before doing anything about NDT. Nutrient levels all need to be optimal for any thyroid hormone to work so if not already tested it would be best to get them done first. If you can't get them done through your doctor, then the cheapest way is with a home fingerprick test (or venous blood draw) with one of our recommended labs. It will repeat your antibody tests but it's still the cheapest way
But first it's absolutely essential to have very good vitamin levels. Did you have vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
Many of us need to be absolutely strictly gluten free
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.
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
I have been on a gluten free diet for a number of years. I had previously asked about a Coeliac Test from my GP, but as I had already been on a GF diet for a number of years, the GP stated that the IGg antibody would not be present, and due to my extreme reaction to gluten i.e. anaphylaxis, he did not want to risk putting me back on gluten containing foods.
Thank you for the advice on the vitamins and minerals and the links.
This just doesn't make any sense at all and I think the doctor has hashi's and untreated:
"but stated that I did have Hashimoto's, and although my levels were out, this was due to either no compliance (not an issue) or non absorption of T4 to T3, and I should continue as normal with my Levothyroxine. "
No wonder we get exasperated with those who are supposed to be knowledgeable yet make the above statements. It is completely unbelievable and you are far better off without doctors like him and look after your own health. At least you'll improve your condition and he is completely unwell.
For a fact this phrase he made:-
non absorption of T4 to T3
has to be investigated. What is the point if the patient has non-absorption of T4 to T3, then they remain very unwell. T4 is inactive altogether - doesn't do anything except to convert to T3 and if it isn't doing so the person is not going to improve at all or even get more problems.
Welcome to our forum and if you copy and paste the part of your history above and put into your Profile (where youhave only put your name) and it gives a background to members and they don't have to keep asking the same questions. i.e. when diagnosed with what, thyroid hormone repacement and dose. etc.
Also there are other cheaper NDTS if you want to source them I believe Thiroid and ThyroidS.
Your story sound so similar to mine and have also had pompholyx terribly and have also been diagnosed with a problem with gluten but not coeliacs. I also had bad conversion of thyroid hormones and needed larger doses. My pompholyx disappears completely if gluten free and comes back within a couple hours of eating gluten - the tiniest crumb so I just wanted to check you read up on cross contamination properly and are doing so as seriously as a coeliac or more - such as not using a toaster used for normal bread - watching for any tiny minute particle. I even blister up if I clean out hay from animals from breathing the straw dust in. Have you looked into shampoos, soaps, toothpaste, lipstick and so on
Also, unfortunately in my case, I cannot eat anything often derived from wheat/barley etc including things that are considered gluten free below the 20 parts per million due to processing - dextrose/maltodextrin/alcohol/vinegar etc and pop up in blisters with a sniff and become so ill again so definitely worth having a thorough look at these. For example, I cannot eat the salt and vinegar pom bears but the plain ones are fine.
The other area I've had problems in is with vitamins and have found it very hard to source some that do not have ingredients derived from wheat or other gluten grains such as trocopherols and the above but let me know if you want a company who's ingredients are pretty much all okay and I'm doing okay with.
If you are that allergic to induce anaphylaxis- all these things are likely to be a major major problem for you.
You'd be surprised how much invisible amounts can affect you. You could try reverting to natural unprocessed food with no chance of gluten in for a while and taking nothing to see if you improve. The phompholyx takes a different time to go away depending on how long i was exposed so the first time I went GF, it took over a year although the itching improved immensely quite quickly. on six week gluten trials, it takes up to three months and on molecule cross contamination it takes around 3 days and is only a thin spreading of blisters.
If you had a problem with gluten, then your vitamin levels were likely dire and these levels don't go up very easily on their own so definitely need to get these checked out - the amounts in your vitamins you take are unlikely to help - such as the amount of vit D is pretty much nothing. I would also maybe suggest stopping the folic acid until you've had your B12 tested.
My entire house and pets have had to go Gluten free
Hope you feel better soon!
Hello Saggyuk
Thank you for your post.
What you have experienced sounds a lot worse than what I have been through.
I have been on a GF diet for nearly 8 years now, and I have to be very careful. My mum even went gluten free with me to avoid any possibility of cross contamination in the house.
After a year of being prescribed useless lotions and potions, I was referred to the dermatology clinic at the local hospital and received light therapy twice a week.
I had to give up my job as a Dental Nurse, as I was advised that frequent hand washing and glove wearing would damage the skin further, and I would have to avoid any jobs that required this.
Thank you again for sharing your story, it is nice to know that other people understand what ones goes through.
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