I have followed this forum for a while with increasing interest & would like to ask for any thoughts & advice please.
Brief history: I had Hodgkins Lymphoma about 30 years ago, had chemo then radiotherapy (abdominal & pelvic). Been in remission since then! Ovarian failure following the radiotherapy when I was 22. Routine testing for IVF showed underactive thyroid so started Levo.
I'm now 50 and my dose of Levo has seemed fine (apart from occasional tweaking). I have been on 100mcg for years, but about 4 years ago, my previous pharmacy started giving me Teva & I felt really rubbish so after reading posts on here, I switched to Boots for consistency of their brand. I have felt better but still not great.
I have always struggled to get my GP to ask for T3 & T4 blood tests rather than just the TSH. Over the last 4 years I've had hypo symptoms of tiredness, fatigue, hair loss, brain fog, and increasing joint pain & muscle aches but TSH has come back normal each time.
I have had the thyroid blood test through Medichecks and have a private GP appointment booked in a couple of weeks. I want to find out if my worsening symptoms are due to thyroid issues or if there's something else going on (or if I'm a moaning middle aged woman!)
Blood results:
CRP HS: 0.41 mg/L (range 0-5)
Ferritin: 275 ug/L (range 13-150) - my mum had haemochromatosis, I've had the genetic testing, I don't have it but I am a carrier of the gene.
Folate - Serum: 8.49 ug/L (range >3.89)
Vitamin B12 Active: 64.5 pmol/L (range 37.5-150)
Vitamin D: 44nmol/L (insufficient). I was diagnosed as deficient a couple of years ago (24nmol/L) but not specifically advised to continue supplements after being prescribed a high dose of Vitamin D for 2 weeks.
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as 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.
Thank you for your reply & advice, I have ordered the Vit D spray, the Vit B complex & Vit B12 lozenges. I'll also look at a gf diet, I'm at the stage where I'll try anything to feel normal again & have some energy! This forum is fab, thank you!
Welcome to our forum Liz599 and thanks for your introduction.
If you copy/paste some of this information also into your personal 'page' and in future members can click on your name if they want to read your history without you having to repeat.
Just click on your name and it will take you to your personal page.
Hi Liz599. Hopefully your GP will see straight away that your TSH is overrange and be happt to increase the Levo dose a bit .. but in case your GP say 's "there's no need to increase your Levo because your TSH is (nearly )in range".. ask him to consider these bits of advice written for GP's:
"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).
If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .
This one ........ found in GPonline.com 15th April 2010.
"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".
"Given the complexity of pathways that govern TH action at tissue and cellular levels, it is not surprising that some patients receiving exogenous thyroid hormone replacement therapy report on-going symptoms despite optimal thyroid function tests
(e.g. normal T4 and T3 with TSH <2 mU/L in primary hypothyroidism).
And to bolster your self confidence during TSH conversations with a GP... see for yourself on this graph of 'healthy peoples TSH levels' that TSH of anywhere near 4 is far from 'normal '.. somewhere near 1 is 'normal' for the vast majority of healthy people.
Welcome, Liz599! Has the doctor told you that you have Hashimoto's thyroiditis? I'm not a doctor, but looking at these labs, your TSH is slightly elevated indicating low hormone production, and your antibodies are on the rise which indicates that your immune system is attacking your thyroid.
I would recommend going gluten-free because of molecular mimicry. If this makes no sense to you, Google it. Also, your vitamin D levels are not optimal, they should be no lower than 60. My doctor, a functional and integrative doctor of osteopathy, recommends that if vitamin D is low, take 10,000 IU's a day for 6 weeks to get it up, then 5,000 IU's daily thereafter. You don't need to take vitamin D at all on days you are in the sun at least 20 minutes (if you're Caucasian, longer for darker skin) and the sun is hitting a large part of your body such as your entire back, or your entire legs.
I would also recommend finding a physician who will prescribe Low Dose Naltrexone. It works very slowly in most people, it took over 2 years for my antibodies to get back in the normal range, but they did! Both of my thyroid antibodies were always over 500 for at least 20 years. After using LDN at 4.5 mg for 2 years, they are in double digits. I managed being both gluten and dairy free for about 6 months after my doctor recommended it to me! Then, on a family trip home for the holidays, I fell off the wagon. I've kept both dairy and gluten extremely low in my diet ever since. So, I consider the success to be from the medication. It's very safe and affordable. It helps with a myriad of autoimmune diseases, and most of the time, if you have one, you will develop another if not treated properly. So, it would be prudent to get started on it right away.
I'm in the US, and I don't know anything about the thyroid medications you mentioned. I have my thyroid medication compounded. I feel it's cleaner that way. I'd recommend researching different types of thyroid medications; how they work in the body and what they're made of to see if that gives you any direction.
I have spoken to my GP this morning & asked for a 25mcg increase of Levo. He ummed & aahed a bit so I explained that I'd had private bloods done & quoted some of the advice given by you lovely lot, at which point he agreed 😁 I was expecting a bit of a battle but it went better than I thought it would!
Thank you for the time taken to help me, much appreciated xx
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