I am looking for a bit of help with my recent test results. I am sorry to ask as I know there are many of us here asking but the nature of thyroid is that there are so many variables aren't there so it is sometimes hard to match others' answers to your own situation.
My history is this:
March 2019 - TSH 6.65, T4 15.4 and TPO antibodies over 1000 (dr suggested monitoring)
July 2019 - TSH 7.92, T4 15.2 (dr said monitor as I was giving up a stressful job)
Jan 2020 - TSH 3.69 (dr said much better and test in 6 months but I mentioned many symptoms such as cold feet, tiredness, fuzzy head, waking in night, drier skin than usual, alcohol intolerance, aching limbs and headaches so she was happy for me to start a trial - started on 50mcg levothyroxine)
June 2020 (asked for wider tests because felt tiredness was getting worse and more aching limbs - basically I constantly felt like I was coming down with something)
TSH 7.9, T4 16, T3 4.1, serum ferratin 72ngl, mean cell haemoglobin concentration 318, lymphocyte count 1.5
The doctor had done a wider group of tests than this but I included TSH, T4 and T3 as well as anything below or near lower threshold of 'normal' range. As a result of the tests the doctor raised my levothyroxine to 75mcg.
I recently read a post where someone was told that they needed to be on a minimum of 100mcg to make a difference. That when you initially take a small dose you begin to feel better for a short time then you feel worse again because your body adjusts and stops making its own. I currently feel more tired than ever - just lethargic all the time and feel achey like I am just about to come down with flu. I also am getting more headaches again but think this may be due to tiredness (and trying to keep going) and dry eyes. I am due another blood test mid July and want to know what people think/what I should be saying to dr.
Due to reading a number of posts and articles I have just bought selenium tablets and vit D to try to boost immunity and general health.
Any thoughts welcome. Thank you for your time and good health to you all.
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MrsQ20
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Don't worry about coming and asking for help, that's what the forum is all about, sharing experiences in the hope that others may benefit.
However, when posting results we always need the reference range that comes with them, ranges vary from lab to lab so to be able to interpret your results and comment we must have the range from your lab.
Looking at your past results, you should have had a diagnosis/started Levo back in 2019 when you had over range TSH with raised antibodies.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, coffee affects TSH so it's possible that other caffeine containing drinks may also affect TSH.
* When taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use Biotin in the assay).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Do you do your tests this way? It's the only way to compare results accurately.
Your Hashi's will cause fluctuations in test results (and symptoms) and that probably explains the big difference in TSH from March and June.
TSH 7.9, T4 16, T3 4.1, serum ferratin 72ngl, mean cell haemoglobin concentration 318, lymphocyte count 1.5
This TSH result shows undermedication. The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well. Impossible to comment on FT4 without the range I'm afraid as they can vary so much. With my surgery's range you'd be at the top (range is 7-17) yet with the private labs many of us tend to use you'd only be 40% through range (12-22).
Your GP was right to increase your dose. See what the results are like next test, you may need further increases to achieve optimal levels.
Ferritin is OK, although it's said it should be half way through range, it's also said that it should be 70 for thyroid hormone to work properly.
Impossible to comment on mean cell haemoglobin concentration without range, and was there also MCV/MCH/haemoglobin?
Due to reading a number of posts and articles I have just bought selenium tablets and vit D to try to boost immunity and general health.
Some people like to test selenium before supplementing, as long as your dose is 100-200mcg you will probably be fine.
However, Vit D should be tested before supplementing, then the dose is based on the result. Taking too much means because Vit D is fat soluble then any excess gets stored and can lead to toxicity. Taking too little means it wont help. There are also important cofactors needed when taking Vit D - magnesium and Vit K2-MK7. Magnesium helps the body convert D3 to it's usable form. Taking D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it's needed and away from arteries and soft tissues where it can be deposited and cause problems such as kidney stones, calcification of arteries, etc.
Sorry reading through again to make sure I have understood properly. If (after Vit D test) it is best to take a supplement as I had considered, I need to supplement with magnesium and Vit K2-MK7. I know magnesium is best absorbed as a spray or lotion but what about KS-MKL?
I know magnesium is best absorbed as a spray or lotion but what about KS-MKL?
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 if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Vit K2-MK7 comes as capsules, softgels, tablets, sublingual liquid. It's fat soluble so needs to be taken with dietary fat unless an oil based sublingual liquid, and if it's a softgel that may also contain oil to aid absorption. 90-100mcg K2-MK7 is said to be enough for up to a 10,000iu dose of D3.
Bloods should be retested 6-8 weeks after this increase in dose up to 75mcg
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. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
assume asthma inhaler doesn't need to be separated from levo?
I really don't know. The timing of my thyroid meds means there's at least 2 or 3 hours between taking them anyway. Of course the medication inhaled goes straight into the lungs and thyroid meds are absorbed through the gut.
However, whether a steroid inhaler (mine aren't steroid inhalers) throw up any problems I don't know. It would be wise to read the patient information leaflet and Google for any know problems between whatever your inhaler is (eg Ventolin, Symbicort, Seratide, etc) and your thyroid meds.
Even if we frequently don’t start on full replacement dose of levothyroxine most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Hi Slow Dragon, have done coeliac test which was thankfully negative and Vit D test which showed ‘insufficiency’ but only just out of adequate range. It was 49nmol/L so that’s good I suppose. I will now trial using Vit d mouth spray, magnesium spray for aches and reducing gluten and monitor if that helps.
Thank you for your replies. Since last blood test in mid June was when they upped my dose from 50-75mcg. 25 is from Mercury and 50 is from Accord. They did say they could prescribe a 75mcg to make it easier but I seem to remember a post on here saying something negative about 75mcg tablet- can’t remember what. I’m due another blood test at end of July.
Correct - best avoid 75mcg tablet - it's only made by Teva and upsets high percentage of people
Come back with new post once you get thyroid results
Remember to get tested as early as possible in morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before test
I have seen a naturopath who has had Hashimoto's since a teen so knows and understands. I am now taking methyl multinutrient, magnesium taurate, Coq10, selenium and vit d mouth spray. I have also gone gluten free - reduced it for 10 days then totally gf now for 12 days. I am still feeling pretty rough. I know I need these things to have time to take effect and only on third week of supplements (staggered start to taking them so last ones only started this week). However I am very emotional (very down for me), very tired - just have to sleep sometimes. My tiredness and need to sleep is especially when my headaches get really bad. I have them most days and they start around my right eye and then can affect usually my right side but can go to whole of head. My eyes are still gritty and I use eye drops to help.
I had a blood test last week and it was just TSH measured which was 3.93 (range 0.3-5) and so have been told by surgery that result is normal. I am trying to get an appointment with my dr (currently proving almost impossible) and feel like I would like to trial another 25mcg of levo (currently on 75mcg).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
guidelines on dose levothyroxine by weight....
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Thank you for your quick replies and help. I have read a lot on here so always book appointment before 8:30 and don't take any food or medication after 9 previous evening. I usually take levo in morning so it is 24 hours + since last dose.
I have mentioned Hashi's to my dr but they have never 'diagnosed' me with anything. On my original test my dr said it looks like I was likely to get thyroid disease in the future.
SlowDragon gave you a link in her reply, it's an NHS lab which does Vit D testing for the general public, cost is £29, method is fingerprick blood spot test (four spots of blood, not a tube like for thyroid and other home tests).
I have mentioned Hashi's to my dr but they have never 'diagnosed' me with anything. On my original test my dr said it looks like I was likely to get thyroid disease in the future.
The raised antibodies would have told your doctor that, plus your raised TSH, but with both together you should have been diagnosed with autoimmune thyroid disease (Hashimoto's is what patients call it) and prescribed levo. Unfortunately, many doctors are unaware of this and still wait until TSH reaches 10 when then will diagnose Primary Hypothyroidism.
So FT4 is 40% through range and FT3 is 27.03% through range. As mentioned, increasing Levo was the correct thing to do. Must be followed up by retesting 6-8 weeks after increase.
Thank you for your replies I think I was getting a bit muddled in the posting
Don't worry, this forum is not like other platforms in that when a new post is made it doesn't follow on from the last post made, it can be confusing. It would be good if there was a "quote" facility, that would make it easier I think.
Thank you- I was replying as other post about Vit d Testing came in so had missed that. Assuming the gluten free comments are because so many people with thyroid issues find improved health when cutting this out?
A lot of Hashi's people are gluten-sensitive, so cutting out gluten helps them enormously. But, it doesn't help everyone. Still, worth a try.
By the way, if you want someone to read your comments, you need to reply to them by clicking on the blue 'Reply' button under their responses. That way, they will be notified that you have replied. Otherwise, they might not see it.
Your ferritin test had one of the enormously wide reference ranges that some labs use. This alters the interpretation of your result.
Your ferritin is only 17% of the way through the range and for many of us that would be much too low. Many people on the forum feel best when their ferritin is about 50% of the way through the range.
Having said that, your result appears to have come from a test over a year ago. Results aren't really valid for that long and lots of things could have changed. In your shoes I would suggest that you need a full iron panel done.
With the results you've given there is no evidence you were anaemic at the time. But people can be iron deficient or very low in iron without being anaemic, and they will usually feel much better if they optimise their iron and ferritin levels. [Ferritin is a measure of iron stores.]
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