I live in Spain and have recently gone from paying privately for treatment to being accepted onto the NHS. It is a relief as having been diagnosed as hypo last summer I was worried about the costs of blood tests etc.
Having had my first tests on the NHS in April 2017 I was disappointed to find that I was only tested for TSH. As this had reduced from 2.59 (0.17 - 4.5 range) in December 2016 to 0.55 (range 0.55 - 4.78) my Dr told me to reduce my levo down from 75 to 50mcg a day.
Can someone please give a simple explanation of why I need FT3 and FT4 tested to give a fuller picture of what is happening so I can translate it into Spanish when I next go.
I also have made note to myself that FT4 should be at the higher end of the normal range and FT3 should be at the lower end, but I can't remember why I wrote that or where I got that from.
It's difficult to say how I feel as we are having a roasting summer and I feel pretty awful at times, but have put that down to the heat (my OH feels awful too!). I have felt extremely weary and tired, and my tingling in my body has got worse, but not sure if that is anything to do with being hypo or not. (I do take vit B12, Vit D and magnesium)
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Milly1958
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I also have made note to myself that FT4 should be at the higher end of the normal range and FT3 should be at the lower end, but I can't remember why I wrote that or where I got that from.
No, that's incorrect. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference range, if that is where you feel well.
T4 (naturally occurring or synthetic Levothyroxine) is an inactive hormone that has to be converted to T3 which is the active hormone that every cell in our bodies need.
FT4 and FT3 measure how much unbound hormone is circulating in our blood (at the point when the blood is drawn). FT3 is the most important test. Very low FT3 with a good FT4 can show that T4 to T3 conversion is poor. Low T3 causes lots of problems, making us feel unwell (hypo symptoms) and we find it very difficult to lose weight (many of us Hypos have a weight problem and find it hard to shift).
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I was disappointed to find that I was only tested for TSH. As this had reduced from 2.59 (0.17 - 4.5 range) in December 2016 to 0.55 (range 0.55 - 4.78) my Dr told me to reduce my levo down from 75 to 50mcg a day.
Was the blood drawn at the same time of day? TSH is highest very early in the morning and lowest in the afternoon. It also lowers after eating so testing first thing in the morning, with an overnight fast and leaving off Levo for 24 hours and T3 for 12 hours is always advised when having blood drawn.
If blood was drawn at the same time, then it could be due to thyroid antibodies - have you had them tested? Positive antibodies confirm autoimmune thyroid disease aka Hashimoto's and a strict gluten free diet and supplementing with selenium can help reduce the antibodies.
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Have you had vitamins and minerals tested? If so what were the results and what supplements are you taking? Optimal levels are needed for thyroid hormone to work.
Thanks for your response Susie. These are previous results:
FT4 July 2016 0.93 Dec 2016: 1.21 (0.7 - 2 ng/dl)
FT3 Aug 2016 3.15 Dec 2016 2.8 (1.4 - 4.4 pg/ml)
Blood tests have all been done first thing in the morning after overnight fasting and 24hrs since the levo was taken.
Antibodies have not been tested.
I take sublingual 1000mcg Vit B12 methylcobalamin
Dr's Best chelated magnesium 100mg
Vit D3 50mcg
I haven't had my vits checked for a while. When I first went to him earlier this year my Dr was amazed at all the vits I took and asked why, and I had to explain they necessary due to me being hypo .... it is difficult with the translation. I had that time taken an interpreter but it didn't really seem to help.
I will have to just try asking if they'll do these tests here and see what happens I think. I was hoping to avoid having to go back to paying privately as we have spent thousands over the years and it was such a relief to get onto the NHS here. For my long term treatment I think I'll need to stick to the Spanish NHS if I want to get the prescriptions through them. Although not free I only pay a small percentage of the actual cost.
BTW I am not really overweight but people have said I have lost weight since being on the levo. Coincidence or not, I'm not sure, but I was not aware I was overweight before, so people telling me I've lost weight is a surprise.
Milly - I think you need antibodies testing to see if you have Hashi's. As all tests were done under the same conditions, there's no explanation as to why your TSH should fluctuate such a lot. The changes in your Free Ts don't indicate a hyper swing that can be caused by Hashi's (free Ts would be much higher and TSH probably suppressed during a hyper swing) but your TSH could.
You really need vitamins and minerals tested to see whether your current dose of supplements are keeping them at optimal levels. Vit D in particular is important because excess Vit D is stored and can become toxic. Vit D should be retested once or twice a year to keep it within the recommended range.
Also, ferritin is very important and needs to be at optimal level for thyroid hormone to work.
When taking B12 we need a B Complex to balance ALL the B vitamins, plus Vit D has important cofactors which we need to take vitamindcouncil.org/about-v... - K2-MK7 is particularly important because the extra calcium that is absorbed from food when taking D3 needs to be directed to bones and teeth where it's needed and away from arteries and soft tissues where it can be deposited and cause problems, K2-MK7 will do this.
My last vit D test in July 2016 was 38 (30-100ng/ml) (and was only 18ng/ml in Feb 2013). Although I started taking them daily I have reduced them down to 1 twice a week more recently as I am aware that this is one vitamin that can be stored and build up in the body (as opposed to the water soluble vits). I will request a blood test next time.
I forgot to say I am also taking a Vit B complex too.
Sorry Susie, I didn't explain that after the TSH test in Dec 2016 I increased my levo up to 75mcg from 50, so I guess the lower reading in April was as a result of that?
I was only diagnosed last July and started on 25, raising it to 50 in August and then 75 in December, and now back down to 50mcg after April's tests.
Yes, the increase to 75mcg Levo would reduce your TSH. In that case, your April result of 0.55 for TSH is absolutely fine and no reason to reduce your dose. What reason did your GP give for reducing back down to 50mcg? You are within range if he is TSH obsessed, and even if it was under range I would be wanting FT4 and FT3 tested to 'prove' that I was overmedicated. If FT3 is within range then you are not overmedicated.
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
Dr Toft 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)."
Dr Toft is past president of the British Thyroid Association and leading endocrinologist.
I can only think that he thought the TSH result was too low and would get lower if I continued on 75mcg. I will certainly try to get a more extensive set of tests done next time and see how I get on.
I am Irish and also live in Spain (16 years) and unfortunately every doctor I have seen here considers me fine as all my results TSH+FT3+FT4 are within lab range! But that does not mean they are optimal, my TSH is around 2 which is ok but my FT3+FT4 are too low and it has taken me to get an appointment in Ireland with a doctor recommended there by an Irish thyroid group to finally get diagnosed at Hypo and he has prescribed me Nature Thyroid. I can not buy it in Spain as its not available but got the prescription filled in Ireland. I too feel way worse in the summer months, I feel I have no life as am just wiped out.
No point explaining why you need a free T3 test as the NHS won't do it unless you have secondary/central hypothyroidism (and/or are taking T3). They also often won't do Free t4 unless your TSH is out of range. Although you'll get free prescriptions from the NHS, if you really want to know how you are progressing, you'll need to pay for private blood tests.
Ther was no need to reduce your levo as your TSH was still in range. You might want to get a copy of the Dr Toft Pulse article from louise.roberts@thyroiduk.org.uk to show to your doctor. It explains that the desired result of medication is to make the patient feel weel and that happens for most people when TSH is under 1 or wherever it needs to be for free T4 to be at the top end of its range. He adds that some people need suppressed TSH and overrange free t4 in order to feel well and that is Ok as long as free t3 in in range. Dr Toft was the presendident of the British Thyrpoid Association so far more of an expert than any GP. Especially yours, who sounds clueless.
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optimal ft3 and ft4? 
Blood test - fT3 fT4 and TSH
Antibody Test results and FT3, FT4
Best written info on why we need FT3/FT4 tests over TSH please?
