Had another blood test this week at the insistence of my GP who was quite forceful about it.
Results are: TSH 0.19 (0.27-4.2) and T4 16.5 (10.5-24.5)
Previous blood test results:
July 2019: TSH 0.04 (0.27-4.2), T4 17.6 (10.5-24.5)
August 2019: TSH 0.014 (0.27-4.20), T4 19.3 (12-22), Free T3 4.12 (3.1-6.8) (Private test)
November 2019 TSH 0.09 (0.27-4.20), T4 19.8 (10.5-24.5)
I know that my TSH is lower than the range but I don't have any symptoms of being hyperthyroid. I'm still exhausted, brain fog, chronic tailbone pain, tinnitus, general aches and pains and so on. The GP was quite rude over the phone when they rang with the results but I pushed back and said I wasn't happy to reduce the Levothyroxine without further investigation, and that ideally I want a trial of T3 to see if it improves things for me. That didn't go down particularly well. I was told "we treat based on TSH". I've had anaemia too, (iron and B12) but they're not interested in that either. Have been supplementing with Iron, B12, Magnesium, and D3 for over 12 months.
I'm seriously considering seeing a doctor privately, despite the cost, as I'm exhausted and fed up. I've got the list of doctors from Thyroid UK. Have people had good experiences with private doctors? I just want to be listened to and given real options to try and get better and would love to hear from people about their experiences. Thanks!
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PurpleThyroid
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Meant to also say: currently on 125mcg Levo daily, weight has been steadily increasing again over last 9 months or so having managed to lose a little a couple of years back.
Absolutely. So frustrating that the GP will no test for this despite me asking endlessly. I've had a private blood test in the past but have to have a blood draw rather than fingerprick so have't been able to arrange one of these over the last few months.
Another GP who is going by the TSH when it is the T4 and T3 that gives a better idea of your levels. The TSH is pituitary gland hormone not a thyroid gland hormone. I haven't come across a doctor yet who doesn't stick to NHS guidelines except Dr Gordon Skinner who sadly is no longer with us. I would ditch your doctor especially if he was rude ... I don't listen to rude doctors.
Can you afford to do your own blood test through medichecks? You need know the TSH, T4 and T3. Also all your vitamin levels need to be optimal for the Levothyroxine to work. So you need to test your B12, Iron and Ferritin, Vitamin D and Folate.
125mcg daily - which I was told was "a lot". Not sure how they can judge that. There's not a one size fits all dose. Will get a private test done as soon as I can. I'd love to ditch the GP...
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.
Lora7again is right - you really need free T3 and free T4 testing - together, and nutrients.
But it's a worry that your latest free T4 has come down. In your August 2019 results, your free t4 was 53% through range; free T3 not so good at 27.5%; in November 2019 free T4 was up at 66.4% through range (did you feel better then?) but the latest result is down at only 50.7% through range.
So if anything you need MORE levo now- to bring your free T4 back up to at least 2/3 through range - or if you can show your free T3 is much worse (as a percentage through range) than free T4, a referral to a lio-friendly endo for a trial of lio. Have you asked Dionne at Thyroid UK for the list of T3-friendly endos - tukadmin@thyroiduk.org [note this is different from the list of private doctors]. Also worth a (new) post asking for recommendations of anyone near you who prescribes lio. Good luck x
Thanks fuchsia-pink. It is a worry that it has come down a bit. I did feel a bit better back in November. Weight gain and worsening of Tinnitus, tiredness etc all worse now than they were (not that they were good!). I have list of private drs but will email for list of T3-friendly endos as you suggest
Low vitamin levels also make conversion of levo to Ft3 poor
ESSENTIAL to get all four vitamins tested regularly and supplement to bring to OPTIMAL levels
Obviously essential to test TSH, Ft3 and FT4 together
Always get all Thyroid testing done as early as possible in morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before test
Please add latest vitamin D folate ferritin and B12 results and ranges
Hi SlowDragon, Absolutely agree with everything you say. GP won't test for vitamins (so will have to get private testing) and doesn't believe that my previously low B12 is an issue at all despite clear neuro symptoms. Currently taking:
Iron tablets - 200 mg, twice a day
Cyanocolalamin - 50 mcg, once a day
Vit D - 25μg, once a day
Magensium with Zinc - not sure what strength these are, they are from Holland and Barrett
Had the earliest test available and 24 hours from last dose. Did have breakfast though before.
Yes, strictly gluten free. Trying to steer clear of soya too but it's in everything and I'm veggie! Currently taking Levothyroxine in the mornings but considering changing to evenings.
He can keep on referring to the TSH alone, and we are (patients) aware it is from the Pituitary Gland - not the thyroid gland, but as long as he aims for TSH is 1 or lower would be fine. Not higher.
It would be good if he could, at the same time, test Free T4 and Free T3 - both should be in the upper part of the ranges. (I wonder if he is aware of this fact).
I think they are not aware at all - and they're not interesting in knowing. Last time I had this discussion with a different GP in the practice they insisted that T3 becomes T4 and not the other way around so no need to test for T3...Dr did not like me saying that was completely wrong...
"You have to lower your dose of T3 because your TSH and T4 is too low".
I replied:
'No, doctor - my TSH is low because I take T3 alone. I don't take levothyroxine!
He responded (like yours) "but T4 converts to T3" No, doctor it is the other way around, T4 converts to T3.
I think it is disgraceful that thousands of people who've hypothyroidism do not have sufficient doctors who are aware of the active and inactive hormones. They only take notice of the TSH (which is from the pituitary gland) and adjust patients' doses according to it alone and not checking FT4 and FT3. They lack the very basic knowledge. It's no wonder so many patients remain unwell.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Agree with the great advice given just remember that taking Biotin in a B complex messes up your blood tests and if you want a test you leave off for one week.
B12 levels are always raised once you start supplementing but keep going, its water soluble and so needed I think.
Good luck, you do need those T3 levels as suggested.
Thanks for the heads up on that - Am trying to gather my strength to push GP for B12 injections due to neuro symptoms (which are getting worse) as they refused last time I tried even though clear symptoms and B12 below range (tested privately in August last year - Active B12 30.100pmol/L (range 37.5-188)
You must push. Not all neurological symptoms will reverse! Just don't take supplements until tested, acknowledged and treated or you will never get the acknowledgement and will deteriorate.
Do you have an 'in range' TSH result from anytime previously when on Levo ?
If you do , and you felt ill at that point , you can use it to throw their 'we dose by TSH' argument back at them.
It's scandalous that we have to keep fighting our way through all these stressful 'encounters' with GP's , without a properly working brain (and yet we still seem to be more able to use our brains than they do!)
Do you want a link to research that shows there are no increased risks for TSH between 0.04 - 0.4 ?
But frankly , if you can afford it , i'd sack 'em all off, and buy your own and do it yourself with help from people who know what they're talking about, on here.
Thanks tattybogle, this is really helpful. I probably do have some "in range" results somewhere from years back. Honestly, I've never felt 'well' for the last almost 20 years, just varying degrees of bad to rubbish!
Money is tight but I'm starting to think that it might just be worth sacrificing something to pay for a private consultation and hopefully get a better quality of life.
Those are the exact symptoms I get when my TSH goes lower than 2.00. I have to keep my tsh between 2-3 or I get the same symptoms. I know that seems like a high tsh but I lived for 15 years with a low tsh and and I had hyperthyroidism. Then I had an ablation and I have been hypothyroid ever since. Low tsh can give the same symptoms as high tsh. Trust me I’ve been on this crazy tsh roller coaster ride my whole life. It took me a long time to figure out that by reducing my levo dosage and bringing my tsh up it gave me more energy and stoped my pain.
I'm sorry you've had that experience. I don't feel like I have any hyper symptoms and for me weight gain despite maintaining exercise and healthy diet is a sure sign that I'm not getting enough, plus wanting to sleep in the daytime.
I thought the same thing for the first five years of this battle. I ended up going to this lady who happened to be an endocrinologist and had been hypothyroid herself for 30 years. When I first saw her I was telling her the same symptoms as you are having. She looked at my tsh which was 0.50 at the time and said to me that I was on the hyper side. I got so mad at her and told her how I was so sleepy during the day and I was gaining weight and so on. She laughed at me and asked me, have you ever let your tsh get between 2-3.00 and I said heck no because I would really gain weight and would be sooo tired. She said trust me lower your dose from 100 to 88mcg and you will see that your problems will disappear. After another year of xrays of my tailbone pain and all of the other crazy symptoms I finally gave into her and did just what she recommended and I finally started losing weight and having more energy and I have never had tailbone pain again. What she says happens when the tsh is low is that when we sleep are sleep cycles stop going into deep rhythms anymore and when that happens the body starts producing more cortisol, which did you know that the body cannot tell the difference between lack of deep sleep and starvation. So then everytime you eat something the body holds onto the calories instead of releasing them. I always gained weight and felt sleepy when my tsh is too low and lost weight and had more energy when I let my tsh raise up. Took a lot of going up and down to figure it out. The main thing to always remember is fatigue is always a symptom of hyper and hypo. I think it’s just worse with hyper because in hyperthyroidism the thyroid hormone tells all the cells in the body even the brain cells to run much faster. It’s like having your foot on the gas pedal and break at the same time. Eventually it runs out of energy and that’s when the fatigue sets in and the muscles start to break down and then you get pain then the calcium starts to release out of the bones to rapidly and that causes the tailbone pain too. I could go on and on about how it effects the body.
I don't agree my ,TSH is 0.38 at the moment and I feel very well. I still have my thyroid but was diagnosed with Graves' disease 10 years ago. Everyone is different and in my case the TSH means nothing and it is the T4 and T3 that counts. Just to add that when my TSH was 0.80 I felt dreadful and my T4 and T3 were very low in the range.
Oh and one other thing is that you mentioned tinnitus. Before I had my thyroid ablated that was my absolute most annoying symptom. It got so loud that I had to sleep with music on because it drove me crazy. But after I had the ablation my tsh risen for the first time in 15 years and my ears stopped ringing. Then I had to wait 2 months before I could start my levothyroxine to replace the hormone that my thyroid stopped producing and as my tsh started dropping the louder my ears started ringing again. It goes back to the fact that the thyroid hormone causes every nerve cell in the body to be over sensitive and over stimulated and tinnitus is caused by an overstimulation of the inner ear nerves. I know it took me so many years to realize all of this. I wish I would of met that endocrinologist earlier in my journey thru this but I had to find one that took levothyroxine themselves to explain all of this
Do you feel well just on Levothyroxine and how much are you taking? I am interested because lots of people I know who have had RAI need both T4 and T3 to feel well and do very well on NDT.
I have never felt well since my ablation. I have tried armour thyroid but it made me feel very bad and caused me to run a low grade fever for a month. I have never tried t3. I’ve always been scared too because of how bad I feel when my tsh drops below 2. If my free t4 ever gets above 1.00 I start to tremble and it feels almost like I’m vibrating inside. My free t3 can never go above 3.00 because then I will start getting irregular heart beats. I had an overactive thyroid for many many years and it was terrible. But so is hypothyroidism. Right now I take 87/87/100 on alternate days of Synthroid. If I take 100 everyday then I will get so tired I can’t function. What do you feel like when your tsh goes higher?
Sleeping in the day, major brain fog, digestive system slows right down, worsening of eczema, increased and more severe migraines, and of course significant weight gain.
Update - my GP spoke to an Endochronologist who said I'm over medicated and that I have to be treated according to the results of the blood tests and not according to any symptoms I may be experiencing. Been told to reduce dose to 100mcg and repeat bloods in 6 weeks (they will only test for TSH and T4, nothing else.) Honestly, this is so unbelievably frustrating!!
I personally would not reduce your dose because I think you will feel worse. Your doctor should not be going by just the TSH and it seems the Endocrinologist is also doing that. I haven't found a NHS doctor who doesn't stick to the guidelines yet so I don't get them involved with my thyroid disease now. If I need any help or advice I ask members on this site or Elaine Moore's. Have you thought about self medicating?
Fine, then you can 'hoist them by their own petard'.
If they say you have to be treated by the results of blood tests , then refuse to reduce your dose unless they can show that you are over range on a FT3 test.
I have a feeling that they actually need your agreement to change a dose, but don't tell you this.
Tell 'em you've noticed that your FT4 has (conveniently !) come down on its own since 2019 , and your TSH is on a rising trend in line with that ie 0.01 /0.09 /0.19 so you would rather wait a while and see before changing dose .
Tell em the risks for low TSH don't start until its below 0.04, which yours is now comfortably above. ( i can post a link to a paper if you need it)
Or you can do as asked and see what happens. Depends on how well you feel now ?, and whether you like playing Russian Roulette when the doctors are in charge of the bullets.
I've had anaemia too, (iron and B12) but they're not interested in that either. Have been supplementing with Iron, B12, Magnesium, and D3 for over 12 months.
Do you have any recent results (last couple of months) for tests of these things? Iron is poisonous in overdose, and if D3 gets too high it is toxic too.
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