Confusing test results and symptons: I'm a 3... - Thyroid UK

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Confusing test results and symptons

Kayls3388 profile image

I'm a 30 year old female, hypothyroid for 23 years. I've always been unsure about treatment and blindly followed my GPs advise about medication. I'm currently taking 225mg levothyroxine a day. Last year my test results were deemed 'perfect' I don't know the exact results but my latest results have come back as TSH 0.05 and T4 20.7. I have an appointment with a new GP on Monday to discuss.

I'm at a loss as I'm struggling so much at the moment witha combination of symptoms; weight gain (even though I've been following slimming world which worked before) tiredness, dry skin, heat intolerance, heart palpitations, dry gritty eyes. Some symptoms are hypo, some hyper and I just don't know what to do next.

Does anyone have any advice of what to ask for, discussion points, further tests etc that I can take with me to my appointment?

26 Replies

Unless you are very large or have no thyroid at all, 225mcg of levothyroxine is a large dose which makes me think you've got an absorption problem. Your doctor needs to rule this out. Ask for thyroid antibodies TPO and TgAb to be tested as people who have one autoimmune condition are more at risk of another coexisting autoimmune condition.

Also ask for B12, folate, ferritin and vitamin D to be tested. Any deficiency in these should raise a flag for further investigation. 2 autoimmune conditions that can lead to absorption problems are coeliac disease and pernicious anaemia but you need blood tests to indicate if this might be a problem. The blood tests for coeliac and pernicious anaemia are not always conclusive but are a first step. Vitamin D deficiency is also very common if you have thyroid antibodies.

Kayls3388 profile image
Kayls3388 in reply to Nanaedake

Thank you for your response. I'll make a note and request for all of those to be tested. I have no idea when they last were! As my results and symptoms have been ok in the past I've never really paid attention but now I'm having real problems I know I should have.

I also have ME (10 years) and IBS (recently diagnosed) could these all be related instead of separate issues?

As for my actual thyroid, it's definitely there but I have no idea of size. I've been all the way up to 400mg in the past as well.

I do take my tablets first thing but I have been taken Citalopram since August, at the same time. Your post is the first I had heard of time gaps between meds in 23 years so will make sure to take them separately from now on.

Nanaedake profile image
Nanaedake in reply to Kayls3388

It sounds very likely that there is another problem underlying your separately diagnosed conditions but you will only know if you get the relevant blood tests.

Ask your GP reception for a print out of historical blood tests or register online for blood test results (again ask GP reception for log in) so you can see what has been going on - if possible before you visit the GP. Post results here if you want help to understand them.

If you were ever given TEVA levothyroxine before 2013 then it's possible that the very high dose of levothyroxine of up to 400mcg was due to lack of efficacy of the thyroid meds as there was a quality problem up until 2013. It's possible the quality problems have caused your other health problems. Your GP probably won't know about the problems with levothyroxine so point them to the MHRA 2012 Report.

It's possible you are suffering from a legacy of poor thyroid control due to lack of levothyroxine bioequivalence.

However, the fact you are still on a high dose indicates some factor affecting absorption now. Hopefully your GP will take you seriously when you point out the information in the report together with your current symptoms pointing to poor absorption.

Many, many people on this forum find that they need to go gluten free (even if they do not have coeliac disease) if they have autoimmune thyroid disease. I'm not sure if there is definitive evidence as to the reason why this helps but SlowDragon has links and good advice about it. However, don't go gluten free until your GP has run tests as you need to be eating gluten for the tests to be valid. Other people have found IBS improved on gluten free diet.

I believe that taking citalopram can affect absorption of levothyroxine, check the patient information leaflet, even if you take it 4 hours apart so you should have blood tests 6 weeks after starting the anti-depressants and adjust levothyroxine dose if needed.

I think it's entirely possible that if you sort out underlying issues, your ME will clear up, IBS will improve and you won't need citalopram. Keep posting on here and getting advice and get your doctor alongside for doing the tests you need. Bring the results back here for best advice. Doctor's often say all ok but that doesn't mean your results are optimal and we need them optimal to feel well when we have thyroid disease. The aim of taking levothyroxine after all is to be symptom free.

Kayls3388 profile image
Kayls3388 in reply to Nanaedake

The citalopram is for anxiety following a car accident in July so not for thyroid related depression/anxiety. Having counselling to deal with the after effects so hopefully won't need it for long anyway. I always read the leaflets when I'm prescribed new meds and it didn't mention anything about interactions with thyroxine.

Unfortunately I don't have time to get to the surgery to get a print off prior to my appointment on Monday but I'll try to get one on the day just before.

I have tested for gluten sensitivity and coeliac but those results came back negative.

I just hope that this doctor listens. Though I might just refuse to leave if she doesn't!!

Nanaedake profile image
Nanaedake in reply to Kayls3388

What tests did you have for coeliac disease? Did you see a gastroenterologist or just blood tests? The blood test is not very reliable apparently.

Helsan profile image
Helsan in reply to Nanaedake

Perhaps you can persuade your doctor to test your T3 as your T4 is high but you are still so symptomatic. there is also a link between ME and low T3. I expect they are also concerned about your suppressed TSH and high T4 and want to lower your dose. As you have symptoms they should look at conversion issues and see if your T3 is low which for me was the case with high T4.

SlowDragon profile image
SlowDragonAdministrator in reply to Kayls3388

Assuming 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 primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Low vitamin levels are EXTREMELY common

Ask GP to test vitamins and thyroid antibodies if they have never been tested in past

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

Thousands on here have found strictly gluten free diet helps. Often IBS improves dramatically

Come back with new post once you have seen GP and got new test results and ranges

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Tony211 profile image
Tony211 in reply to Nanaedake

Not sure if weight has anything to with it I’m on 300 mg and I’m only 11 stone

Nanaedake profile image
Nanaedake in reply to Tony211

You can check adequate dose and possible factors preventing absorption here

Tony211, somethings wrong if you're on 300mcg levo and 11 stone. Check out absorption issues or coexisting autoimmune disease. A full replacement dose for someone weighing 13 stone and approx. 5 ft 6 inches high is 107mcg. Of course there can be some variation but 300mcg if you weigh 11 stone is a very, very big variation.

Tony211 profile image
Tony211 in reply to Nanaedake

Hi that’s wat I’ve been on for the last six months I’ve never been lower than 200 mg in the last 4 years I don’t know much about thyroid just have blood test n do as doc says

Nanaedake profile image
Nanaedake in reply to Tony211

Make a new post and ask people on this forum for advice.

Kayls3388 profile image
Kayls3388 in reply to Nanaedake

I've been to the GP this morning and I'm being referred to an endocrinologist at Derby. Not before she kept telling me I'm overweight. Fully aware of this fact, that's why I'm here telling you I'm still having problems, shouldn't be gaining weight when actively trying to lose it. Horrible woman.

Managed to get the last few test results.

21.11.18 - TSH <0.05, T4 20.7, T3 5.2

30.07.18 - TSH 0.12, T4 20.1, T3 4.4

25.10.17 - TSH 0.02, T4 17.1, T3 4.4

11.05.17 - TSH 0.02, T4 20.9, T3 4.4

Nanaedake profile image
Nanaedake in reply to Kayls3388

Have you got the lab ranges for these?

Do you always take levothyroxine on an empty stomach such as first thing in the morning, leaving at least an hour before eating or drinking anything except for water and do you make sure you take any other medication 4 hours apart from levothyroxine?

Helsan profile image
Helsan in reply to Nanaedake

My endocrinologist and pharmacist said one hour is enough for most medications but leave at least 4 hours for any iron supplementing. that's what I do but others may differ.

Nanaedake profile image
Nanaedake in reply to Helsan

Any foods with calcium or antacids with calcium carbonate can also affect absorption. I would leave at least 2 hours between levo and other meds and 4 hours for iron. Latest NHS advice was to leave 4 hours between Levothyroxine and calcium containing foods I believe.

SlowDragon profile image

Do you always have the same brand of Levothyroxine?

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Kayls3388 profile image
Kayls3388 in reply to SlowDragon

You know, I have no idea about brand. It's crazy that I've had a thyroid condition for so long and know so little about it. This is definitely something else I'll be checking from now on.

Hidden profile image
Hidden in reply to Kayls3388

I call this the ostrich syndrome. I use to do this all the time with my health...after losing my thyroid I no longer have ostrich syndrome.

Conversion issues have been mentioned by others but there is another possibility for your need for large amounts of thyroxine and your continuing symptoms - Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It is genetic, causes hypothyroid symptoms and requires very high Free T3 levels in the body to overcome the resistance.

If there are other family members with fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease, thyroid or depression this would further support this.

Havecs look at the site of Thyroid U.K. who run thisxforum. They have lots of good info which will explain things to you and tell you the best way to manage your condition. Could also be useful to show your doctor as well.

I’ve found that I feel best with Armor thyroid. At this point it’s hard to find anyone that will do further testing or “true”experts” -

My biggest problems are joint aches, which I’ve been told are arthritis. One doctor increased my Armor to help with joint aches and I felt worse.

I guess everyone is different. Good luck- I wish I could say more.


Hidden profile image
Hidden in reply to Andrea77

Andrea77....I have joint pains as well "arthritis" so I'm told funny though never had issues until I was put on Synthyroid 2 yrs ago now it's a constant crippling at times companion.

The beta blocker is working against your thyroid meds. Betablockers block adrenaline response. Its keeping your t3 production down to slow you down so best to wean yourself off them. Dont stop suddenly.

magsyh profile image
magsyh in reply to magsyh

Sorry those are actually antidepressants. They also block t3 production to slow you down. I was given betablockers for my anxiety made everything worse

Hi It's funny (not literally) I am reading this and thinking this is exactly how I feel but I'm only on 25mg, my eyes are especially sore and I sometimes wake up in a panic in the night thinking I've gone blind! I just wish there were more comprehensible tests around the thyroid, I am thinking about going private as I feel my problems are not being addressed. I wish you well as it's not an easy illness to try and help yourself. Some days are better than others.....feel more tests are required...

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