Hello, I wonder if you could give some advice on my recent blood test results please. GP text to say I am now Hyperthyroid (TSH and T4 tested) and he would ring to talk about reducing my Levo dose. We’ve since spoken and I persuaded him to hold off until I received the T3 results from Medichecks; I have no Hyper symptoms and in fact feel better than I have done in a long time despite the fact my weight is strangely still increasing. I followed all the advice on taking blood tests although my NHS appointment was 10.40am (had no choice over this). I did the Medichecks one earlier. GP is due to call me again in the next day or so to discuss and I’d really appreciate any advice please.
Here's some info from the last few months:
April – after much discussion old GP agreed to increase Levo from 25mg to 50mg with the aim of reducing TSH to less than 2 (it was 1.28 in Apr 19 when I felt much better). Agreed to retest iron levels after seeing Medichecks results and subsequently prescribed 6 weeks of iron tablets. I also took a course of Folic acid and have been taking Vit D spray 3000iu daily.
June – GP agreed to increase Levo to 50mg (Mon, Wed and Fri) and 75mg (Tues, Thurs, Sat and Sun) but not to allow TSH to go below 1.
Sept – GP agreed to increase Levo to 75mg every day – no bloods taken as shortage of blood tubes.
Oct – on my request, a new GP agreed to change my prescription brand from 75mg Teva to Accord (1.5 tablets of 50mg per day) to see if it improves brain fog, memory, constipation, bloating etc. He mentioned perhaps looking into why I don’t absorb Iron and requested I have blood tests when the blood tubes are available. As I have had every test to check that I am not losing blood from anywhere and I am not coeliac I decided to research why I am not absorbing Iron. I suspected I might have low stomach acid which can cause malabsorption of iron, medication etc and bloating so have been taking apple cider vinegar daily.
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Beany101
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Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Thanks very much for your prompt response and my gut feeling was to refuse a reduction in dose but I was worried about getting seriously ill if I was "over medicated". If I was over medicated surely my weight would be reducing drastically?
My weight has gone up about 2 and a half stone in the last 18 months or so and I'm now just over 75kg, so guidelines would suggest 120mg of levothyroxine?
Yes, I only took folic acid for a month. I've just read the article about folate and folic acid... some very concerning information there. I'll look into those Vit B supplements this morning, thankfully I'm fine taking large capsules. I used to take powdered "Greens" which is a wholefood supplement of various dried veggies (no artificial additives, sweeteners etc)... the label doesn't say it contains folate but, from memory, I think it does.
I received such great advice to my first post back in April and I should have sorted out my supplements then but my brain just wouldn't play ball... I've spent most of the summer like a zombie.
Do you also think I should be supplementing with Iron tablets? When my prescription ended around June time, I reverted back to taking Spatone (1 or 2 a day) but the GP said to lay off these until I had my blood tested. As I've had a hysterectomy the top of the range is 400 so I'm quite low within that range.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thanks for this info SlowDragon. As I've suffered with low Iron most of my life I try to include a lot of Iron rich food... I have liver pate every week, apricots etc and I was told corned beef is also very good, but there's always room for improvement. I was hoping the hysterectomy would sort me out but no such luck. I think one of the main symptoms I get from low iron is blurred vision.
I'll ask if the GP will do an iron panel test first but, if not, will use Medichecks again... really impressed with their service.
You’re likely to see TSH slowly increase over coming months as your body gets use to being on current dose
Likely to need further increase in levothyroxine over next year
guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually on, or near 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.
Thank you. Unless my TSH rises above 1 I doubt my GP will even contemplate increasing my dose. How often should they/I test my bloods if my dose has not been changed?
In primary care doctors are likely only viewing a TSH blood test and reading the dogma off the computer which likely states that you are now " Hyperthyroid " :
Once on any form of thyroid hormone replacement the TSH looked at is isolation is the most unreliable measure of anything.
The TSH was originally introduced as a diagnostic tool to help identify a patient with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement, as then you measure T3 and T4 .
The accepted conversion when on T4 only is said to be 1 / 3.50 - 4.50 T3/T4 so to find you conversion ratio you simply divide your T3 into your T4 and I'm getting your conversion coming in at around 3.30 - so slightly faster than the accepted " norm " but if you feel ok and have no symptoms of over medication, so be it.
The computer does not know your medical history and apparently doesn't know that if your are diagnosed hypothyroid it is impossible to become " hyperthyroid " : but you could become over medicated which, currently, you are not.
As you say you feel better than where you were and your T3 and T4 are in range so there really isn't any issue, if your doctor accepts your private medical results and ranges.
Thank you very much for replying. It's really frustrating when they only test TSH, I was surprised they actually tested my T4 this time although I think this was down to the Lab rather than the GP. But, as you say, still rather pointless if they haven't tested my T3.
I was worried about resisting a reduction in dose as wasn't sure of the implications of being "over medicated" but after yours and SlowDragon's advice I'm happier about sticking to my guns.
I think the majority of our GPs/Endocrinologists who prescribe thyroid hormone replacements need a 'refresher course' as I believe many members on this forum know far more than the majority of GPs.
I also think that GPs only take notice of the TSH and never check Free T4 and Free T3. Probably wouldn't understand what TSH means (i.e. (thyroid stimulating hormone).
My GP asked last week if I was constipated as I could now be Hyperthyroid... I said I think it's the other way around... Hypo = constipation and Hyper = diarrhoea!
GPs seem to be unknowledgeable about the purpose of a thyroid gland. They panic when TSH is low and assume we've become hyPERthyrid and immediately reduce dose of levo and that decision can mean that patient begins to feel more unwell as symptoms return.
Thanks for all your advice. I've just spoken to my GP and, as expected, he wanted to reduce dose down to 50mg and 75mg alternate days. I stuck to my guns and he said ultimately it's my body and all he can do is advise. We've agreed to stick at the same dose and retest my bloods in 6-8 weeks. I've assured him I will reduce the dose should I start to experience any symptoms of being overmedicated. He did say they really only look at the TSH level and are concerned about it being out of range. As this is still likely to be out of range in 6-8 weeks I assume the T4 will also be retested then.
As it appears my T4 is adequately converting to T3 do you think I should do a private test again in 6-8 weeks to test my T3 or will the T4 be sufficient?
SlowDragon , Just an update: my GP phoned me again a few days after agreeing not to alter my dose (1/12) to say he'd referred my case to a senior partner who was adamant, due to a "duty of care", that my dose needed to be reduced... alternate days of 75mg and 50mg, despite my T3 and T4 being in range and me feeling so much better. I have another blood test on 17/1 to check levels.
It's 8.40am on Monday. I've reluctantly been on the lower dose for a month as they only gave me a 28 day prescription for this dose. I've been so tired and my memory is completely shot, and I'm struggling to find my words. I really don't think they'll increase my dose back up and I'm so scared they're going to reduce it further.
Sorry for not replying sooner. I've postponed my blood test until next week... that's 7 weeks after the reduction in dose. Not ideal but the best I could do. I live in Bristol and have obtained the list of NHS and private endocrinologists and will ask for a referral when I speak to my GP about the blood results. Thank you for your help, it's really appreciated.
Sorry for the delay in replying. I've postponed my blood test results until next week and will ask for a referral when I speak to my GP about the results. He does know that the T3 and T4 are within range but says they go by the TSH level!!!
Yes I know and that is the basic problem with thyroid hormone treatment within primary care, and why many of us resort to private testing so we can actually see a T3 and T4 reading.
In this way we can then see how effective we are at converting the T4 into T3 as it is T3 that runs the body and gives us our wellness.
Too low a level of T3 and we have symptoms of hypothyroidism just as too high a level of T3 may give us symptoms of hyperthyroidism.
I requested my doctor run a T3 and T4 and had to pay for the pleasure :
I then had the evidence of a very low T3 compared to a very high T4 :
It allowed me a referral to an endocrinologist :
Whether it be financial constraints at the surgery or the laboratory the NHS seem to believe a TSH blood test is acceptable to dose and monitor on ;
However an endocrinologist will run aT3 and T4 as a basic and if you are lucky the endo will be aware of reasons for poor conversion, like low vitamins and minerals, and be able to delve further into your health issues and try to resolve them as the endo is also able to offer more than T4 - Levothyroxine medication and can rebalance your levels with T3 - Liothyronine.
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