Hi I am a newbie looking for advice following thyroid results with antibody levels.
I am 28 years old and I was diagnosed hypothyroid May 2018 and I take 75mcg Levothyroxine. This was upped after below results.
I have symptoms of intermittent crushing centre of chest pain, ears ringing, breathlessness when walking uphill, tiredness in backs of legs, tearfulness, fatigue, depression, dry skin, constipation, puffy eyes, dark rings under eyes, pins and needles in feet, dizzy spells, periods very heavy too. Are these caused by thyroid?
I have lost weight too, GP has referred me to Positive Steps a mental health service because he thinks the weight loss is caused by stress. I have a feeling he is wrong but I don't feel it is my place to tell him what I think because he is meant to be the expert. I have been diagnosed with general anxiety, psychosis and neurosis as well. Possibly coeliac too.
Another GP has referred me to endocrinology.
There is no Hashimoto's confirmed in the family history but mum has hypothyroidism and diabetes.
Thank you in advance for advice.
Aug-2018
! TSH 4.6 mIU/L (0.2 - 4.2)
FT4 15.8 pmol/L (12 - 22)
FT3 3.2 pmol/L (3.1 - 6.8)
! Thyroid peroxidase antibodies 1800 IU/mL (<34
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Amber_Lee
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I have been diagnosed with general anxiety, psychosis and neurosis as well.
Oh my goodness! Who diagnosed you with that lot? GP or specialist? If GP then refute it and insist it's taken off your medical record.
Your problem lies here
! TSH 4.6 mIU/L (0.2 - 4.2)
FT4 15.8 pmol/L (12 - 22)
FT3 3.2 pmol/L (3.1 - 6.8)
! Thyroid peroxidase antibodies 1800 IU/mL (<34
What has your GP said about the two over range results that have been indicated by ! ?First of all, to have an over range TSH when diagnosed hypothyroid and on Levo means that you are grossly undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
See article by Dr Toft, past president of the British Thyroid Association and leading endocrinologist who said 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 article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
where you can see under Thyroxine Replacement Therapy in Primary Hypothyroidism
0.2 - 2.0 miu/L Sufficient Replacement
> 2.0 miu/L Likely under Replacement
So you need an immediate increase of 25mcg Levo, retest in 6 weeks, a further increase of 25mcg at that time unless TSH is down to around 1, repeat retesting/increasing until your levels are where they need to be for you to feel well.
Your Thyroid Peroxidase antibodies are way over range and yes, you are correct, you have autoimmune thyroid disease aka Hashimoto's. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
With Hashi's, the antibody attacks cause fluctuations in symptoms and test results. You can have symptoms of hypothyroid and "hyper-like" symptoms as well. Your weight loss could very well be caused by this (weight loss can be a hyper symptom).
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. So it's very important now to test the following:
Vit D
B12
Folate
Ferritin
and you may very well find that your pins and needles in feet, dizzy spells, periods very heavy are down to low levels of some of these.
Do you have a partner, someone who knows you well who can be assertive on your behalf if you can't be? If so, take this person to your next appointment with your GP. Refuse the referral to Positive Steps, insist the mental health diagnosis is removed from your record (if your GP diagnosed this) and say you want these vitamins and minerals tested and the chance to optimise levels, and you want an increase in your Levo until your levels are where they need to be. Then say once you are optimally medicated with optimal nutrient levels, if you still have any signs of what your GP thinks is general anxiety, psychosis and neurosis then you will agree to a referral to a specialist for a possible diagnosis.
You could also ask for a referral to an endocrinologist. However, may people are very disappointed with this because most endos are diabetes specialists and know little to nothing about the thyroid. But if you do want to go down this route then email Dionne, as above, for the list of thyroid friendly endos then ask on the forum for feedback on any that you can travel to.
But as a first step, get the vitamins and minerals tested, come back with the results (include the reference ranges) and members will help you go forward from that point.
Oh my goodness me! Little wonder you feel ill. Did you GP not talk about all these "!" flags on these results? Your levels of so many things are dire. I can't help you, but SeasideSuzie will be able to help you. You do not have mental health issues! You have severe vitamin and mineral deficiencies. Your B12 is right at the bottom, That will be causing a load of your symptoms all by itself. The random bruising for a start.
Your doctor is not a good doctor. Hang in there. If you can do as Susie suggests you will improve no end.
I still can't get over this list! And all he gave you was 800 Vit D. That won't help at all. You will need to be supplementing in the thousands to affect that. But your iron is really, really low!
You really need testing for B12 deficiency/Pernicious Anaemia so if you have any signs/symptoms from that list then write them down and show a different doctor. You could very well need B12 injections.
! Folate 2.36 ug/L (2.50 - 19.50)
Another out of range result, and this shows folate deficiency. Show a different doctor.
! Vitamin D 36.8 nmol/L (25 - 50 deficiency) - prescribed vitamin D 800IU
Well, 800iu D3 isn't going to ever raise your level enough. It is hardly a maintenance dose for someone with a reasonable level. The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L.
I would suggest you buy your own D3 supplement as your doctor may not increase what you've been prescribed even though you are in the "deficiency" category.
As you have Hashi's, for best absorption an oral spray is recommended as it bypasses the stomach. BetterYou do a 3000iu spray.
For your level the Vit D Society recommends a dose of 5300 IU daily to reach 125nmol/L and a dose of 7400 IU daily to reach a level of 150nmol/L. I would suggest you go for 6000iu daily of the BetterYou spray then retest after 3 months.
Once you reach the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
BetterYou do a combined D3/K2-MK7 spray if you prefer.
But like I say, seeing a different one would be preferable to the one who has ignored all these results. I would make sure you are prescribed all the correct supplements but don't start folic acid until further testing of B12 has been carried out and injections or supplement started otherwise the folic acid will mask signs of B12 deficiency.
If you have to see the original doctor, and you don't have anyone you can take to the appointment for moral support and to act as a witness (this makes a massive amount of difference, which I know from personal experience), then if you have a mobile phone which can record, then place it on the desk and say "I'm sure you wont mind me recording the consultation but I don't remember everything that's said and this will remind me when I get home". That alone will make a big difference too.
Don't start all supplements together, stagger them. Start one, give it 2 weeks, then add the next one if there's no reaction to the first one, give it another 2 weeks and again if no reaction add the next one, etc. That way if you do have a reaction you will know what caused it.
SeasideSusie's mention of magnesium might have a beneficial impact on your chest pain. Low magnesium can lead to cramp in muscles throughout the body - and the heart is a muscle.
Another suggestion - low potassium leads to muscle cramps and spasms. Don't supplement potassium though. Search on the web for lists of potassium-rich foods and incorporate some into your diet every day.
This looks like a good list - it covers lots of other nutrients besides potassium :
I have been diagnosed with general anxiety, psychosis and neurosis as well.
Ask the doctor who diagnosed this when he became a qualified psychiatrist. He's just making it up as he goes along! And you don't want those diagnoses on your medical records - any symptom you have from now on will be put down to anxiety and meaningful medical care will be almost impossible to come by. I second what SeasideSusie wrote - you should refute those diagnoses and insist that your thyroid is properly treated and that any nutrient deficiencies are corrected.
I have symptoms of intermittent crushing centre of chest pain, ears ringing, breathlessness when walking uphill, tiredness in backs of legs, tearfulness, fatigue, depression, dry skin, constipation, puffy eyes, dark rings under eyes, pins and needles in feet, dizzy spells, periods very heavy too.
Based on those symptoms, I would expect your nutrients to be severely deficient - probably both iron and vitamin B12, at the very least. And your under-treated thyroid will be causing a lot of them too.
Do you suffer from indigestion, heartburn or other gut problems? Your mention of coeliac makes me think you probably do. Has your doctor done anything about this?
Thank you, I have not been tested for coeliac but my suspicion is that I have it. I get unexplained hiccups, flatulence, unexplained weight loss and bruising. I sometimes get heartburn and indigestion.
I am worried I have heart problems as they are in the family history but I am in my late 20s so I don't know why I get the chest pain, it radiates to my back and in my arm and jaw but not all the time.
If your GP thought those results didn't need treating, apart from the vitamin D, then he should be ashamed of himself.
Vitamin D You need to take a higher dose of vitamin D than you've been prescribed. 800iu per day is roughly the dose some people might need to maintain an already optimal level. In fact to maintain my own level (which is around optimal) I take 2000 iU per day. It is possible to buy high dose vitamin D online without a prescription.
For someone with a level as low as yours you need to take 5000 iU per day for around three months, then re-test to see how your level is doing. You need to get your level up to around 100 - 150 nmol/L. SeasideSusie has lots of info on vitamin D supplementing and all the additional nutrients you need to metabolise it properly.
Ferritin (iron stores), Haemoglobin, Iron, and Transferrin Saturation are all showing that you have too little iron because they are very low in range or below range. Your bottom of range MCH and below range MCV also indicate low iron.
You should be taking iron supplements. Incidentally, you mention being worried about your heart and the crushing chest pain you get intermittently. From personal experience I know that very low iron can cause dreadful chest pain. It may take a while to improve matters once you start taking iron, but getting your iron levels up will reduce the pain and eventually it should disappear. It took about a year for me, but then I'm a lot older than you. The episodes of pain I had became fewer and fewer and further and further apart until eventually they just stopped happening. I don't get chest pain any more.
Low Free T3 causes chest pain as well, by the way, so getting your thyroid hormone levels up to optimum will help reduce the pain too.
If you start taking iron supplements it is important to get regular blood testing done to check on your levels.
A private test that you can do without involving a doctor is this one :
To begin with you would need to get tested every 6 weeks. But once you know how fast or slow you raise your iron levels you may be able to decrease the frequency of testing.
I wrote some posts on the subject of iron that you might find helpful on this thread :
Iron supplements can be bought from pharmacies or online. There is no point in taking an iron supplement off the shelf in a supermarket. They only contain about 15mg of iron per pill. Supermarket pharmacies and other pharmacies have decent strengths of iron supplement - that link I gave has some links within it that should help.
I took ferrous fumarate 210mg, 1 tablet, three times a day. These are the ones I take :
If you have any problems getting prescribed iron supplements just remember that they can be bought without prescription, and if you have problems tolerating one, there are loads of different kinds of iron supplement to choose from.
It is a good idea to take 1000mcg (1g) vitamin C per dose of iron. It helps your body to absorb iron, and reduces the constipation that is common when taking iron supplements.
I won't add anything as you have had great advice. Your story sounds like mine 30+ years ago, then 25 years ago, then 20 years ago, then 15 years ago ! Doctors seem to not know anything - Still - about thyroid. Good luck and keep returning here. I healed myself after 35 years with the help of this amazing forum with all these helpful friendly people. x
Insist on GP running Coeliac blood test. If result is negative you need to remain on gluten rich diet until endoscopy (maximum wait 6 weeks) If negative then you can immediately change to strictly gluten free diet
Do not go for brainwashing or graded exercise - it doesn't help and my friend died after being persuaded to ignore and work through was actually a twisted bowel! Refuse to accept diagnosis of mental problems or CFS as you will never be taken seriously again. It is not a bad idea to deal with stress, but listening to healing sounds and taking up meditation (Tm and vedic are the easiest to do) for even 10 mins twice a day will do a lot more for stress than these nasty programmes. Your results show that you have Hashis (most doctors call it autoimmune thyroiditis) and that is probably the cause of all your symptoms (but it's not worth as much funding to the GP practice). GP can't diagnose your mental health - needs to be a properly trained psychiatrist.
Hi so sorry you feel so unwell and I know how it can cause anxiety not understanding I know how worrying it is I fear my doctors wanted me to take the thyroxin
sorry my reply pinged off before I was finished - as I was trying to say was I too used to be worried but I now think positive and decided that my body needed to get rid of as many pesticides/herbicides in my food so I went organic so my body could concentrate on healing itself. I am on a plant based diet (lentils, beans, grains and lots of fruit and vegetables) love the food once I learne3d how to make delicious meals. Food combining is important so if you go down this route too you need to do it properly or it could make things worse. NO JUNK FOOD is the most important thing. My antibody test showed last month 245! Bit of a shock at first which could also indicate Hashimotos so I am going to see a nutritionist tomorrow who understands an organic plant based diet to make sure I am eating the right foods so I know what ones affect my thyroid - I asked to see an endocrinologist but it wasn't approved - instead they want me to take a gluten test in two weeks??? I have to eat gluten products up until then or the test doesn't work. Fortunately I don't have any symptoms it was only at a routine blood test this high antibody count showed up - in the past they just diagnosed me with hypothyroid - at first I was diagnosed hyperthyroid 15 years ago following glandular fever (heart rate 100 at rest), but by adding more wholegrain wheat, lots of green vegetables and soya over a period of 6 months I had put the weight back on as it slowed my thyroid (heart rate 60 at rest) so I know what I eat affects how my body handles this autoimmune illness but I now know I should not have carried on eating that diet which slowed my thyroid down once my heart rate came back to normal but unfortunately I then became hypothyroid. So now I am reversing my diet by cutting out food which slows it down and eating foods that speed the thyroid up. I am hoping it works once again. If you are being offered to see an endocrinologist I would jump at the opportunity. Good luck.
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