Hi I wrote a couple of weeks ago about my fears that my Hashimotos was not being controlled properly as I no longer have a thyroid gland.
Some of you very kindly gave me advice and Slowdragon, told me how to do a correct blood draw which I had last week.
I received a letter off my GP today which has left me confused. He states : ‘your thyroid test shows that there may be a problem in the way that Thyroxine is taken. This you are probably aware of but just reminding you to be taking it every single day about 10 minutes before any other tablets. Some supplements and vitamins may effect the absorption of Thyroxine’. He then goes on to say and I am sumerising, do this for 3 month while you freeze to death and then we will retest.
My question is: how could anyone tell from a TSH and a T4 test that I’m incorrectly taking Thyroxine??
I have taken it the same way for 12 years!! I do take Vitamin D but just before bed, not in the morning, that is the only vit/supplement I am on. The only difference this time , was I followed Slowdragons protocol before the blood draw.
My husband will get the test results tomorrow I hope, so I can post them on this thread.
Thank in anticipation
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Feja
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It's called "patient blaming" and means that he has decided that his treatment of your condition is perfect, but as you're still complaining, and/or your test results are "wrong", it must be down to you taking his treatment wrongly ....... "obviously" you're missing some tablets out, and those you do take, well, you're slugging those down with all of Holland and Barrett's stock. That he thinks a ten minute gap between L-thyroxine and everything else, is adequate, gives an indication of his grasp of such matters.
MaisieGray you’ve made me chuckle so much I am actually feeling slightly warm. Thank you.
Must admit I got quite defensive when I read the letter, then decided to hand it over to the experts on here as I couldn’t fathom how he came to the conclusions he had!!
Because you didn't have any meds for twelve hours before blood draw which was first thing....is that it? So you have no measurable hormones in the blood perhaps....all the other years it looked fine but it wasn't. Why do they rely on tests instead of symptoms!
Thyroidectomy patients do much better on NDT, but your GP wouldn’t prescribe it, but you could ask your Endo about a trial or at least T3 along with your thyroxine. Do you have any FT3 results?
Thanks for your response Muffy. My Thyroid just disappeared, probably due to high antibodies I suspect. It just wasn’t there on my last scan. I’m am currently not under the care of an Endocrinologist though think after this, I may be requesting a referral. I asked for a T3 blood test and my GP refused as there was no point as he couldn’t give me T3 anyway!!
Hi Feja. Are you in the UK? I have a suggestion about what might be happening. When I was hypo my results came back from the NHS lab with the following message next to the thyroid results for T4 ‘below low reference limit. If the dose of Levothyroxine has remained unchanged for 4-6 weeks these results suggest it is inadequate or poor patient adherence to agreed therapy.’ Do you get printouts of your blood results? This means you need a raise a dose if you are getting symptoms and maybe something has changed about your condition. However, your doctor could have decided that it was just you not ‘adhering to the agreed dose’. If your blood results have the same note attached, it gives GPs a great opportunity to blame the patient. How dare your GP deal with this by letter and not check your symptoms with you in person to see if the dose is inadequate. This takes ‘treat the blood test not the patient’ to a whole new level. Your GP is a jerk who is prepared to make you ill. Your GP has also never read the instructions on the leaflet about how to take Levo and not taking anything else for an hour or more. Grrr!!!!
Yes I’m in the UK. I had spoken to him prior to the blood test and stated I was symptomatic and miserable. Added to the fact I have no thyroid gland at all and I asked for T3 test as well, which was refused.
We shall see what the lab has said when I get the results later. However, this may be how he has come to this conclusion.
I'm confused now. I used take my tablets every morning even if I was having a blood test. Then I read on here that you should wait until after the test so what will this have done to my results now compared to how it would have been before? I've never had any comments about mine being different.
So you been undermedicated for years but now it is showing up as the blood tests are not just measuring the levo you just took, but your actual levels.
Yes, I did get mine back through the hospital subject to 6 monthly reviews but having been seen in November my next appointment has come through for February which is not 6 months. I did a get a prescription for 3 months worth last time and hadn't run out so left the prescription with the pharmacist for when I need it. They telephoned yesterday to say they have 1 months worth there but the supplier can't get any more so in January I will get 1 months worth guaranteed and then goodness knows what will happen if they can't get it. The ombudsman found failings with the CCG and are now making an official investigation but not heard anything from them for weeks.
Of the UK ones I've only ever had Mercury Pharma and that is what the hospital get. My local pharmacy say they can't get me Mercury Pharma unless the endo writes that on the prescription and he wouldn't do that. Seems the hospital are now struggling to get it. I'd be prepared to try Morninside but having had issues with the German one and the French one I'd much prefer to stay on what I know. Worried about getting Teva as people on here don't seem to get on with it.
Might be good to have Morningside then. I did contact them and ask them if it was known to cause dizziness and they said no. That is what happened on the German and the French one.
Hi there, i too have absorption issues with Thyroxine replacement and feeling to cold.
I recommend you try broad spectrum digestive enzymes. Enzymes are catalysts and get things going with the by product of heat.
I have taken them for two weeks plus and im not cold anymore which was a side effect i was not expecting but very happy with. I only take half the recommend dose one tablet not two. It is for those of us that do not absorb to well. They say it will max out absorption of vitamins and minerals so just perfect for me with my hypothyroid digestive tract.
Ok I have my test results and I am quite cross with my GP if I’m being honest.
Serum TSH level 5.63 mlu/L range 0.27-4.20mlu/L
Serum T4 level 19.3 pmol/L Range 12-22.00pmol/L
Thyroid report comment.
High TSH with high or high/normal fT4.
Exclude reduced treatment concordance.
(Most likely) or variable absorption of Thyroxine (e.g. by co-administration of drugs that can affect Thyroxine absorption such as FeS04, calcium carbonate, PPIs and certain antacids).
Before considering a dose for ncrease.
Advise the patient to take a stable dose of Thyroxine for at least 6-8 weeks before repeating TFTs.
Interestingly, My blood test previous to this one was in May 2017, which the doctor told me were fine when the lab has marked them as abnormal-doctor actioning. (hence me being cross)
As:
Serum TSH 0.18
Serum free T4 21.6
The units and reference ranges are the same as above.
I had obviously taken my meds prior to the blood draw, although my GP didn’t know this.
What the heck does the 2nd sentence mean in the report??
Would it be wise to seek a referral with an Endocrinologist now l, as it’s going to take a long time to get an appointment? Does anyone know of any in the Bath/Bristol area that are good with Thyroid rather than diabetes.
Make an appointment to see your GP and STRONGLY refute the accusation that you are not taking your medication correctly. Make the point that you are NOT missing doses and you are NOT taking any other medication alongside. Point out the latest NHS advice is to ensure calcium containing foods are taken 4 hours apart from thyroid medication and 10mins between levothyroxine and other meds is inadequate so you always leave more than 4 hours!!
Absolutely ensure the Doctor records your compliance with medication dose and administration in your notes. Then ask him what he intends to do about investigating the real cause of thyroid hormone inadequacy. Absolutely do not accept TEVA levothyroxine. Stick to a historically more reliable brand.
"Exclude reduced treatment concordance." You asked what this means. It appears to mean that the doctor should exclude your lack of compliance or lack of correct administration. In other words, check you're taking the meds and taking them correctly.
Are you taking other medications due to your medical conditions? If so, then ensure they are at least 4 hours apart from thyroid hormone as it's not only supplements that can affect absorption. Some conditions also affect absorption. If you have poor digestion, it's something that you might need to improve through diet.
Strongly suggest you get full Thyroid and vitamin testing privately as next step
Or push GP to test vitamin levels and thyroid antibodies plus FT4 and FT3
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
Have you had change in 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
Thanks Slowdragon, I normally take my Levothyroxine as soon as I get up with my lemon water and about an hour later have my first decaf coffee and other tablets. Which are antacids, beta blockers, aspirin and an anticonvulsant/migraine treatment. I may also take pain killers such as ibuprofen and cocodomol.
Normally I don’t eat for several hours after getting up.
It would be impossible to take my Levothyroxine at night as I have even more meds, including a prescribed vitamin D supplement.
Which lab would I approach for the full thyroid screening from finger prick blood test?
Ask GP to test vitamin D, folate, B12 and ferritin plus coeliac blood test
Always get actual results and ranges. Post results when you have them, members can advise
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.
Acid reflux often improves once strictly gluten free
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
I’ve been reading everything I can about Hypothyroid and Hashimotos, strange how you only need to do such in depth reading when your symptomatic!
I’m not sure my GP will consider all the extra tests even if I show him the evidence, particularly as he believes my problems are down to poor compliance. So I would like to know where I can have a full Screen from a fringe prick blood test is that is feasible.
A gluten free diet also sounds like the way to go too. I eat a very low fat, high fibre diet with very little gluten at the moment so it wouldn’t take many changes to become gluten free. Would it be wise to the GP about my diet changes?
Antacids often contain calcium carbonate or other components that affect thyroid hormone absorption so ensure you take them well away from thyroid hormone.
If you follow SlowDragon's advice about gluten free diet you may find you can wean yourself off antacids with the help of your GP. You are taking a lot of medication which may all have side effects. If you can optimise vitamins, improve diet and exercise and get thyroid medication on an even keel, you may find you won't need to take so many other medicines.
Sometimes people end up on other medicines for symptoms that are related to less than optimal thyroid care. It's very common if you read through threads on this forum. You might even be taking medicines that are for side effects of medicines so you might have to unravel it carefully. Rule out any other coexisting health conditions like coeliac disease and pernicious anaemia and if you've no other health conditions then you're not particularly "complicated", just very medicated. Ask your GP to help unravel it.
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Wondering 
Confused!
When did you take your levothyroxine?
Confused about blood test advice. GP or the empirical?
