30 Year thyroxine user: I am fairly new to this... - Thyroid UK

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30 Year thyroxine user


I am fairly new to this community. After 30 years of taking Thyroxine 120mg and never been told about my antibodies and also having regular blood tests I thought I would ask to have my antibodies tested for my last blood test. The result were returned by a call from my GP telling me I am not anaemic but my store of iron in my body has depleted to a very low amount. I now need to go for further tests which means camera tubes down my throat and up my colon to see if my body is bleeding from somewhere, i.e., an ulcer or cancer. I've had two tries previously of a colonoscopy and they couldn't go the full way due to it being so painful for me. I eventually had a different test of 40lbs of air being inserted into my colon which was painless. All of these tests were this year. I am due to third colonoscopy this year in 5 days.

Should I have had more antibody tests throughout my years of taking Thyroxine, do the GPs automatically ask for antibody tests when asking for blood tests. Some of the topics on this site make me think they don't.

I'm obviously very worried.

11 Replies

The antibodies destroy the thyroid gland. Sometimes patients become symptomatic when they have high antibody levels but their thyroid hormone levels have not yet fallen. Also, antibodies seem to carry their own set of symptoms, but this is vague, I don't know if anyone has even done any useful research to help these patients. In your case any antibodies you had initially will have almost certainly disappeared after 30 years. Assuming you were successfully treated over these 30 years there was no point in checking antibody levels. If you were still getting hypothyroid symptoms, or getting irrratic symptoms or irratic blood test results it would have been sensible to check antibodies.

I've just noticed you mention a recent goitre in another post. It would make sense to check your antibody counts now to see if it explains the goitre. It would also make sense to carry out an ultrasound scan of your thyroid, especially as they are looking for a cause of low iron levels. I can't comment on why they are doing endoscopies for your iron problem, I assume they are familar with your case history, age etc and are being prudent.

Ricketts40 in reply to jimh111

Regarding my diagnosed of multi- nodules and then the re-diagnosis of a 'backward growing goitre 5 years ago I have never had this problem looked at even though my recent visit to the GP with a very dry throat and a feeling of throat sticking together, and my drinking a half pint of water every night', I was told to 'drink more water'. GP did say that if I had a goitre it would show by my having a thickened neck either side. Does that include a backward growing goitre!!! I do wonder about the ability of GP's and their knowledge of hypothyroid sufferers.

jimh111 in reply to Ricketts40

Given you are on 125 mcg levothyroxine which is close to a full replacement dose for some patients it's difficult to explain the goitre in terms of simple autoimmunity. If there was sufficient residual thyroid tissue to produce a normal goitre why would you need so much levothyroxine, would the thyroid not be pumping out more hormone? I would ask for another endocrinologist referral to invesitgate the goitre and whether it is having an effect on your iron levels.

Ricketts40 in reply to jimh111

Well I have had an endoscopy and am waiting to hear from my GP the results. One thing I didn't mention in my previous comments was that for the PREVIOUS 3/4 months of my being told that my iron was very low I started to eat gluten free bread, porridge, etc., to see if it would make me feel healthier. I hadn't eaten it before and read that it could help improve my health. I asked my GP for a blood test to check my antibodies and the result was that my iron level had dropped considerably, hence my needing the endoscopy to rule out a bleed somewhere in my body. Could eating gluten free food cause ferritin loss. All of the other readings were fine. I am going private to have an ultrasound on my throat as my GP won't offer one on NHS.

jimh111 in reply to Ricketts40

You say your iron had dropped considerably. Does this mean you have an earlier result and they can see a drop, or you only have this recent result?

SOME gluten free products are low in nutrients, including iron, but I can't see that it would make a big difference to your iron levels (I'm guessing this, don't have expertise in what proportion of our iron comes from gluten products). I don't think going gluten free would have reduced your iron levels to any extent. If you were coeliac it would help iron levels.

See what the results of the endoscopies say, it's a good idea to have the thyroid scan, if only for peace of mind. Do you have any thyroid blood test results? Hypothroidism can cause low iron levels. It would be useful to see your ferritin results, 'dropped considerably' is not specific.

Ricketts40 in reply to jimh111

As far as my Dr. goes I assume my iron levels are fine when I have the usual 6 monthly blood test for my thyroid as I don't hear anything from him to the contrary. Would those tests have shown a poor ferritin level?? I think I had more blood test in 2017 than ever before, so I would have thought a low ferritin reading would have shown up in at least one of them, but this is the first time I actually asked the Dr if I could have my antibodies checked, and of course the low ferritin was discovered.

jimh111 in reply to Ricketts40

May not have tested ferritin levels previously. I'd ask your surgery for copies of your blood tests over the last few years.


So do you also have high thyroid antibodies?

You need to know. Did GP or Endo ever test these? If not ask that they are tested.

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

If 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 stop 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 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







For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available


Vitamindtest.org.uk - £28 postal kit

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies


Link about thyroid blood tests


Print this list of symptoms off, tick all that apply and take to GP


See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed



I am sorry you have to undergo yet another procedure.

Antibodies are not always tested as routine but if you do have them you have an Autoimmune Thyroid Disease called Hashimotos (the commonest form of hypothyroidism).

The antibodies attack the thyroid gland until you are hypothyroid and they wax and wane until you are.

Many members have gut problems due to being hypothyroid so if they have any information that can assist you they will respond.

Members who do complain of gut problems are usually prescribed antacids for their symptoms but, if hypo, we usually have 'low acid' and need to have acid added in order to dissolve food properly. I don't think doctors know much more than looking at the T4 and TSH. Members source their own digestive enzymes or take a couple of spoonfuls of a good Apple Cider Vinegar mixed with juice or water to provide acid during meals.

I am not saying you have low acid but it is more likely to be low than high if hypo.

Did your doctor do a Full Thyroid Function Test, i.e. TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Ask if he can do so - if not you can have a private test for those not tested.

Levothyroxine has to be taken on an empty stomach with one full glass of water and wait an hour before eating. Food interferes with the uptake.

Leave a gap of 24 hours between last dose of levo and test and take afterwards as this keeps the TSH at its highest and may prevent doctor adjusting dose unnecessarily.

Ricketts40 in reply to shaws

Hi to all of you who replied to my problems. Thank you. I have not replied earlier as have just lost my eldest brother.

The outcome of my tests back in January results in my being given Omeprazole 20 to be taken twice a day. Ferritin tablets, also twice a day, Desunin 4000 for low Vitamin.D once a day. A 2nd visit to a different Dr also resulted in my being prescribed Telmisartan 40mg for high blood pressure.

On my visit to see my Dr after tests in January I also told him that the back of my arms and shoulders ache all the time to which his reply was 'thats all part of it'. I repeated this comment in a follow up visit to the different Dr. who's reply was 'part of what'. She then prescribed the Telmisartan and Desunin. The Omeprazole and Iron tablets seem to be at odds with my stomach so I stopped the Omeprazole after 6 weeks. I still have the arm pains and presume that it's all part and parcel of hypothyroidism. I also recently went and had a private ultrasound on my now newly discovered 'very small thyroid gland' as my Dr. would not send me for test, and wasn't very interested in the results of it when I showed him. What I find incredible is that in 30 years of having a thyroid problem (120mg levothyroxine daily) I have only ever seen my Endo once. Is that a good thing or not!!!!

I am about to send for a blood test with Medicheck just to see what is happening in this temple of mine.


Hi Ricketts40,

First of all I am very sorry you have lost your brother. It is sad when we lose someone we love and care for. I lost my sister last year and I miss her dreadfully so understand completely how you feel.

Remember the procedure,i.e. draw blood as early as possible, fasting and allow a gap of 24 hours between levo and the test and take afterwads.

Copy and paste your above comment ontoa brand new post as no-one else will see it as the post is now 2 months old.

You will get more responses and advice. You will see from the following link the symptoms we can have. Also if you have gut problems it is usually because we have low stomach acid and doctors assume it is high (symptoms so similar) so that why they prescribe for high acid instead of ensuring we take either a couple of spoons of Apple Cider Vinegar mixed in water or juice or Digestive enzymes. Because our digestion is slow food isn't digested properly.

Also say you were diagnosed thirty years ago.


Hypothyroidism is thought 'easy' for doctors to diagnose and prescribe and that's why only referrals to an Endo if we are not improving. Sometimes this is also a waste of time as they don't listen.

Also mention on your new post that you have been hypo for 30 years.

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