Thank you for letting me join I am 32 years old and I was diagnosed with hypothyroidism in 2011, 4 years after an ultrasound showed my thyroid was enlarged and vascular and I had a high TSH. The GP I saw at the time said there was little point in testing for antibodies because the surgery only tested for them in exceptional cases. I went to a different GP surgery who tested my antibodies and they came back raised.
I was started on Levothyroxine 5 months later after my TSH was in its 20s and Free T4 below range.
I never felt completely well on Levothyroxine and I have so many symptoms - ears ringing for hours on end, hard stools, tiredness, eyes feeling sore and heavy, difficult swallowing, chest pains, weight gain, splitting nails, cracked heels, heavy periods, dry skin, paleness to face, bone pain. I also have low bone density and my bones are prone to fracture.
I take no other medications, just Levothyroxine though I took Omeprazole in 2016 for 3 months for acid reflux which was diagnosed with an endosopy. I also had orthopaedic surgery in 2011 for a ruptured hip tendon and this needed to be repaired.
I lost 2 jobs due to how badly I have felt, parents have shunned me regarding anything health wise. Sorry if I sound like a lost case. I take 100mcg Levothyroxine.
Many thanks in advance
December 2017
TSH - 4.90 (0.2 - 4.2)
FREE T4 - 14.8 (12 - 22)
FREE T3 - 3.3 (3.1 - 6.8)
THYROID PEROXIDASE ANTIBODY - 375.3 (<34)
THYROGLOBULIN ANTIBODY - 458.5 (<115)
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33Anne
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I''m sorry your parents have shunned you. It's a sad thing that many of us have friends or family who do not try to understand our condition and turn their back on us. You'll get a lot of support from this forum and many people have got better by following the advice of experienced people here.
I'm sorry you lost 2 jobs but this is also, sadly all too common when we have unresolved symptoms as we don't get the help we need from GP's.
TSH - 4.90 (0.2 - 4.2) Your TSH is above the top of the lab range and shows you need more thyroid medication. It's best to alter thyroid meds by 25mcg at a time and restest in 6 weeks and then adjust and so on until your TSH is around 1 or a little lower which is where most people feel well.
FREE T4 - 14.8 (12 - 22) Your FT4 is low confirming you need a dose increase. FT4 is best in top third of range.
FREE T3 - 3.3 (3.1 - 6.8)FT3 is very low, again confirming you need a dose increase. FT3 is best in the top third of the range too.
SlowDragon has links and good advice about improving gut function as Hashimotos is as much about the gut as about the thyroid apparently but I'll let more knowledgeable people comment on that side of things.
YOu need to ask your doctor to test B12, folate, ferritin and vitamin D as these are often deficient in people with thyroid disease who are symptomatic and don't feel well.
Eating 5 prunes a day may help to strengthen bones.
Thank you, my first employer was aware I had hypothyroidism when I was working for them but the administrator there was less understanding and was always asking me to do short notice visits that no one else wanted to do (I worked for a care agency) I also had to help look after my mum who is disabled after I came home from my shifts.
The second employer was less understanding, she had no union or occupational health put in place. She said I couldn't possibly be hypothyroid. My symptoms made me function so badly that she got annoyed with me, resulting in my resignation. She then reported me to social services for my incompetence. I can't help but feel like a bad person
You are definitely NOT a bad person. You have a long term condition and you've not had the help you need to get well and stay well.
Your employer is out of order to report you to social services. You could seek some legal advice. I believe you can have a half hour consultation free at many solicitors that deal with employment law. However, right now, your main priority is to get well and find out what is preventing you getting back to full health.
Ask your GP for a dose increase in your levo and retest in 6 weeks. Also ask for vitamin levels to be tested.
Read up on SlowDragon's advice about diet, food and going gluten free as many have found this helps a lot.
Maybe you could get some advice about finding the right kind of work to suit you once you're feeling better. Have you got a college nearby? Some run free courses that might help to get your confidence back again. They also often have a library with local employment advice and lists of employment agencies.
Thank you, I undertook a hospitality course in March 2017 and I passed that. I am currently in a temp job, I was only meant to have been in it 3 months and they have kept me on since then.
Yes, they are, very much so. There were 2 temps - the other only stuck at the job from June to November 2017 and left his temp agency without telling them or our employer. I was expecting to finish my contract on December 22 2017 which was my last working day before Christmas but my boss invited me to return in the New Year and since then I am still there! I asked my boss if I could take some leave for tomorrow's GP appointment and make the time up. He said "sure, no problem."
Vitamin D was 60.1 in December 2017 (50 -75 suboptimal) and I take 3000iu with K2 and MK7 since September 2017. 800iu I get on prescription doesn't seem to raise it.
Ferritin was 59 in December 2017 (30 - 400) haematologist would like it above 50 and my ferritin is monitored every 3 months so the level does not fall below 50. I have found it difficult to take ferrous fumarate tablets since they upset my stomach and so I have not been taking it since it was represcribed to me.
Folate was 2.3 in December 2017 (2.5 - 19.5) and I take folic acid 5mg since October 2016. I had to stop it for the B12 injection but have since restarted it after the second injection was done and intrinsic factor antibodies were repeated and were negative (though pernicious anaemia not completely ruled out since homocysteine not checked).
Vitamin B12 was 362 in December 2017 (190 - 900) since my haematologist would like it above 500. I asked for B12 injections as part of a trial to see if they would relieve my neuro symptoms and the second injection in and my dizzy spells have gone.
You could raise your iron levels with diet. Have you tried taking vitamin C with ferrous fumerate to see if it helps ease your stomach? Also, you could ask your GP for if you could try a different kind of iron since the last ones didn't suit you. NICE guidelines suggest trying a different kind if one kind doesn't suit.
You need ferritin above 70 to mid-range for thyroid hormone to work well.
You can help raise your iron level by a maximum 200g per week of liver, no more, due to its high Vit A content, and include lots of iron rich foods in your diet, weblink posted by SeasideSusie below.
Ask the doctor why he thinks your folate level is so low when you've been taking 5mg for 2 years. It looks like you might have an absorption problems. Your doctor may need to investigate pernicious anaemia further since intrinsic factor was negative. Also, you may need to rule out coeliac disease. Ask GP if he/she could rule this out. I think it's the transglutaminate that's tested. In the meantime ask if you could have an increase dose of folic acid.
Thank you, the vitamin C I took with the iron was from Holland and Barrett, 1000mg and it was in effervescent tablet form. They made my stomach feel quite heavy. I will ask my doctor to rule out coeliac disease since my vitamin levels are just so bad and not really improving. And as for the weak bones alongside the vitamin levels...that isn't right. Something is definitely wrong somewhere.
Try another type of vit C. I'm not sure effervescent is a good option. What do they put in it? Get the best quality vitamin C you can find.
If you are not absorbing nutrients from your food properly then you might not get enough for strong bones. You say calcium is low and has your doctor tested minerals like zinc? Perhaps doctor needs to check out parathyroid function if calcium is low? Not sure how they are linked exactly but you could Google.
Zinc was found to be normal in 2013, it was 17 (11 - 23) however I did a zinc taste test with a private nutritionist and I couldn't taste the zinc tablet at all. I am wondering how accurate the zinc blood test is?
I think there was ascorbic acid in the vitamin C and there was zinc in that too. Also artificial sweeteners.
Sorbitol has a laxative effect and some people react badly to acacia (also found in some levothyroxines). Try to find one without all the junk in as there's less potential for problems.
I'm not sure Solgar are the best but I take Solgar 1000mg which are free of gluten, wheat, dairy, soya, yeast, preservative, sweeteners, artifical colours and flavours. They are a capsule but if you can't swallow a capsule you could break open and sprinkle on food or in a cold drink.
That's a good idea, thanks I can't take orange juice in the morning, stomach isn't awake for it at that time. No problem at any other time during the day though.
Porridge always helped me take the ferrous fumerate so worth a try. remember the coeliac blood test is unreliable as stated on the NHS website so even if they come back negative, you should still seek a biopsy but even this won't rule out NCGS so worth trying gluten free after even if results are negative
It scans three areas I think - not the whole body. Have you had the Calcium tested since you've been supplementing the Vit D? You need vit D to absorb calcium in your stomach so you may have increased the calcium since then if you've managed higher Vit D levels?
You definitely need a dose increase in regards to your thyroid meds and if the doc was happy to leave you at that level, I would suggest you find yourself a new doctor!
Is there a reason for the low vit levels - do you eat enough or do you have any stomach issues.
Would also recommend a gluten free diet but must be 100% gluten free including cross contamination and for at least 3-6 months to see if it will make a difference.
Don't let yourself fee bad over this, I've been in exactly the same position as you up until recently with everyone not understanding for decades and the docs are pants and no help at all, just offering anti depressants. They are useless and have very little knowledge, they just don't like to admit it. Now I've managed to reverse the majority of my apparently incurable health conditions lol!
Were the calcium tests before or after supplementing the Vit D?
Yes they're pretty typical of coeliac of gluten intolerance. There's clearly an issue with absorption anyway if you have a good diet and eating enough.
Yes still on the low side then. Get the stomach issues sorted and higher Vit D level and then restest later to see if improved. There are other things that can lower calcium but I expect it's to do with the absorption issues and previously low Vit D levels
I fractured a bone in 2005 and fractured the same part of it again in November 2017, the bone itself feels like it is definitely not lined up properly. I get a lot of dull aches in it, sometimes it is constant and other times severe stabs of pain come out of nowhere. Also tender, my boyfriend can lean his arm on it and press down on it and the pain is just agony.
I don't mind seeing a chiropractor however I once saw an osteopath privately and it cost me £35 per session and as long as I can get a chiropractor on the NHS it is not a problem. Going private is something I can't really afford to do due to me being a temp and also having to spend money on other things - car, shopping, helping boyfriend out with expenses, etc. Not only that but the osteopath didn't diagnose me properly!
I had to see an osteopath for my hip problem - they thought I had a problem with a lower back muscle since I am hypermobile (I have increased flexibility in my joints) and sent me back to my GP basically with a letter asking the GP to do more investigations - the GP refused. Another year goes by and I needed an operation on it
Yes I know, they're all pants. best thing is to learn everything yourself and treat accordingly ignoring anything the docs say lol!
Yes I had hypermobility all my life but now it's gone and it's actually a little annoying as not used to be being so inflexible lol. Much better than the pain and problems I used to have though lol
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Obviously your vitamins are terrible. In part because under medicated, but also very likely to have gluten and/or dairy intolerance issues
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 significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ask GP for coeliac blood test first
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
You're significantly under medicated. Your dose should be increased by 25mcgs and retesting 6-8 weeks
Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Low stomach acid can be an issue, especially when under medicated
Symptoms are virtually identical to high stomach acid
Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL
Thanks Slowdragon, there is a very strong suspicion I have coeliac disease due to the bone weakness I have, low calcium levels, low vitamin and mineral levels and the digestive problems I have. I have lately had an increase in diarrhoea when I only really get hard stool all the time
I really feel for you and I'm sure that most of us have been there. My former GP was very knowledgeable about thyroid issues and worked on how I felt rather than what my test results showed. He allowed me to increase my dose and I started to feel better, even though I was classed as slightly Hyper on my test results. Also, different brands affect me, so ask your pharmacy to try different brands, but give them a good month to kick in before making a decision. Family and friends struggle to understand our thyroid issues, and my husband has called me a 'hypochondriac' on a few occasions! Charming. I also feel like a 'nuisance' refusing certain levothyroxine brands, but please hold your head up high and demand what makes you feel better. This is a lifelong condition so accepting that taking a pill and 'getting on with it' is not acceptable. Good luck
I can't take TEVA either - really bugs my kidneys and makes me feel very sick. Many people have had issues with TEVA on this site. For me, I think it's down to the manitol as not good with fake or alcohol sugars so chose those with lactose in but everyone suits different brands but TEVA is by far is the most complained about one. Get your pharmacy to get you a different type
When we have malabsorption issues magnesium is often deficient. Standard blood tests for testing magnesium are unreliable and rarely comes back under range
Calm vitality magnesium powder is cheap and easy to use. Starting low and slow. Plus must be 4-6 hours away from taking Levo. Taking in afternoon or before bed as it is relaxing and helps sleep.(early evening if you take Levo at bedtime)
Detailed supplements advice on Low vitamins due to under medication
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I am 32 years old and I was diagnosed with hypothyroidism in 2011, 4 years after an ultrasound showed my thyroid was enlarged and vascular and I had a high TSH. The GP I saw at the time said there was little point in testing for antibodies because the surgery only tested for them in exceptional cases. I went to a different GP surgery who tested my antibodies and they came back raised.
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