Hello again and thank you for previous help. I have a GP appointment on Monday and will be discussing my latest blood test results. Since starting thyroid treatment I feel a little less tired and have a little more energy considering I don't sleep much. I have had no adverse effects. I need to know if the latest results are an improvement after one month treatment or if a higher dose of levothyroxine is needed or if I need to keep at this level for another period of time. . I just do not want to go to appointment unprepared as the treatment was a trial and I don't want it stopped.
Last month test result
TSH 4.28 mU/L range (0.3 - 4.2)
FT4. 17.0 pmol/L range ( 10.6 - 23.2)
FT3 4,1pmol/L range (3.1 - 6.8)
Latest results
TSH. 1.79 mU/L range (0.3-4.2
FT4 17.9 pmol/L range (10.6 - 23.2)
FT3 3.7 pmol/L range (3.1 - 6.8)
Serum ferritin 63.0 ug/l (13 -300)
Serum iron level 13.2umol/L (10 - 30)
Serum transferrin 2.72 g/L. (2 - 3.6)
Transferrin saturation index 19.4% (0 - 50)
Vitamin D 60 (sorry don't have range)
I really appreciate all information and advice.
Thank you, Potter 5
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Hello Greygoose and thank you for reply. Yes both blood tests taken at 9.00am and fasting. The second test, after treatment, I took levothyroxine day before around 6.30am. so was over 24 hours . I am just not sure what the levels mean at this stage. Thank you again greygoose. Kind regards Potter
Thank you Greygoose, yes FT3 is lower than the first test but I didn't know what this meant. Does the GP just go by the TSH level, it has also come down. What increase in dosage do you think I need. Thanks again greygoose. Potter
There's no knowing what your doctor will take notice of. Most of them just go by the TSH, and he could very well think that your TSH is fine. So, point out to him that the FT3 has reduced and is now much too low.
Increases should never be more than 25 mcg every six weeks.
Thank you again greygoose I will point out about the FT 3 and suggest retesting maybe in a month's time. Good to know about dosing amounts also. Thanks again greygoose. Kind regards Potter
Hi Greygoose can I just ask you another question please, if 50mg Levo reduced my ft3 to a lower level, how does raising the dose of meds increase it. I know I won’t get her to agree unless I can put up a good argument. I appreciate any further information you can give me. Kind regards Potter.
Taking 50 mcg (not mg) levo didn't reduce your FT3. I've no idea why your FT3 reduced, that's not normal. But, it does need to be brought up again. But, your TSH is still too high, when you're on thyroid hormone replacement, it should be 1 or under. And, if she says something about being in range, tell her it's the range that is wrong, not you. A 'normal', euthyroid person, with no sort of thyroid problem, has a TSH of between 0.85 and 1.25. And, if your TSH is so high it's because your FT3 is too low. And the FT3 is the most important number because T3 is the active hormone. And she shouldn't be dosing by the TSH, anyway.
Greygoose, you are very kind and I will try to digest this for my appointment. Isn't it awful when you are ill you have constantly to be one step ahead otherwise the gp will wash over things.
I have had so much help here and do appreciate it. Thanks again greygoose. Potter
Yes, it's terrible. And that's why I self-treat. I don't see why I should have to go cap-in-hand to beg for the right level of thyroid hormone replacement, when the only thing that is stopping them giving it to me is their ignorance. You'd think it came out of their own pockets! Well, I'd far rather pay out of mine than accept their grudging charity!
Ask them for the proof of that. Ask for details - how, exactly, does a low TSH affect hearts and bones when all it does is stimulate the thyroid and conversion? Where is the evidence?
This is why we have to learn about our disease, so that we can argue with them and know when they are wrong. When you realise that the only spend half a day on the whole endocrine system, you understand that their knowledge of the thyroid in particular is very skimpy. All they are taught is that levo is the 'gold standard' treatment for hypo (they don't know why) and that the TSH just needs to be somewhere in the rediculously wide range. They have no idea about T3, or the TSH level of a euthyroid person, or what antibodies do. These things were probably not even mentioned in their half a day. Yet they thing they can treat this life-threatening condition? It's laughable! Stop being over-whelmed and dominated by them, they're making it up as they go along and cannot back up what they say with hard science.
I’ve just had words with an endo about the same thing. I told them they have no idea how my bones were 10yrs ago so how can they say it has thinned them now. Dexa scan booked for next month but as there Is osteoarthritis in the family anyway I will still argue my corner especially as I have had treatment bordering on negligence if not actual negligence
Typically it should be 6-8 weeks after each dose increase
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Is this how you did the test?
Your GP unlikely to want to increase dose, yet. Though your FT3 is actually lower than first test.
Assuming you are in the UK vitamin D is usually measured in nmol and 60nmol is on low side. Many ppeople on Levothyroxine find it better to supplement to raise levels to around 80-100nmol
But it's too high for GP to prescribe
Vitamin D mouth spray by Better You is good as avoids poor gut function.
Suggest you supplement 1000iu for 2-3 months and retest.
It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Hello Slowdragon, thank you for reply. Yes, the bloods were drawn just as advised. Both 9.00am and fasting and took levothyroxine after test. I don't know what the FT3 being lower means.
I have just bought Better You vitamin D spray with K so hope this will help. Ihave had thyroid antibody test and it was fine, I don't have copy of test , I usually try to get copies of all tests. My B12 is always high over 2000 but that is because I have weekly injections and foliate 17. Again I don't know if iron is too low or not, I eat lots of green vegetables daily and always squeeze lemon over so I would have thought it would be a little higher.I was tested a few years ago for pernicious anemia but this was negative. Sorry for the tag hemochromatosis, I think the computer must have entered this.
Hello SlowDragon. Thank you again. I take 75mg asprin daily. So maybe I shouldn’t be taking vitamin k. Just started recently with the vit D. My b12 was 164 range 200 - 700, over3 years ago. Had been unwell and lots of symptoms for a number of years but not picked up. Permanent nerve damage now. Foliate range is 4 - 25 I think. Sorry don’t have paperwork at moment. I do take b23 complex. At present just a basic . Have been looking but a lot have I think a high b6 which I would be concerned about. If you have any thoughts I would appreciate it. I have to try and convince gp tomorrow to increase my dose of thyroid meds. Will have to come up with good argument. Thank you so much again, SlowDragon. Kind regards Potter
Thank you again SlowDragon, I will look into these vitamins. Good idea about splitting dose. Not sure which antibodies test. I think for Hashimoto. Thank you again for al this information. Potter
Hello Scotland43. I am cautious about b6 as in high dose it can cause nerve damage. I have a b12 deficiency and permanent nerve damage and always concerned that it could be made worse. A lot of b complex have quite a high b6. As a young woman I took b6 before we had access to so much information and always think it may have been a contributor and always trying to put connections together so for me I am just being cautious. Kind regards Potter
Sorry to butt in but I was reading your post because I noticed you saying you take aspirin and shouldn’t take K2 ? I am taking both what’s the problem if you don’t mind me asking?
They would have opposite affects in the body. Aspirin would thin the blood vitamin K increases clotting. I think the actual reaction to the body would depend on dosages.
50mcg is a low dose (unless you are very light), although your FT4 is well up in range. However since your FT3 went down, I would be inclined to say you need a modest increase (12.5) in T4 dose, and if your FT3 is still below mid-range after 6 weeks on increased T4, add in a small dose of T3. It looks like your iron is too low, suggest you use a chelated iron supplement and/or use more iron-rich foods and/or use digestive aids like betaine+pepsin and digestive enzymes. It would be nice to see your TSH lower; I recently let my TSH rise to 1.4 (even lower than yours), and I did NOT feel well with TSH that high. Inexperienced docs simply do not know where TSH needs to be, and they are ridiculously squeamish about pushing TSH below 1, even when the patient feels well. They tend not to trust how the patient says they feel, although how the patient feels is the MOST important measure of successful treatment.
Helllo Eddie83, thank you so much for reply and this information.My app with gp is this morning and advice invaluable. I am 66 years old and weigh 8st 7lbs. Very fragile at moment with frozen shoulder pain and neurological symptoms. I think the modest increase in medication might just sway her with retesting in 6 weeks. Also thank you for advice on iron. Iron always low, but never suggested by gp that I supplement. The level surprises me as I eat lots of green vegetables daily and always squeeze lemon over to extract as much iron as possible so will flag this up too. Thank you again and I will post up how things go at app. Kind regards Potter
Hello SlowDragon, thank you for reply. Yes I think my iron is low considering I eat red meat twice a week and lots of dark green vegetables daily and always squeeze lemon over. I will eat pate, I do like it. Eddie83 mentioned the iron issue just before my appointment and I discussed it with my gp and sheprescribed ferrous fumarate 305mg daily.
It is just since joining this group that I learned the connection with hydrothyroidism and frozen shoulder. It is putting all the connections together. I also was prescribed the moderate dose of 12.5 levothyroxine as suggested with retesting of bloods in 6 weeks. The gp I saw today was our locum, she is excellent and listens. Thank you again SlowDragon. Potter
So your weight is about 120 lbs, correct? About 55kg. The full-replacement dose of T4 is about 1.7mcg/kg, so 1.7*55=93mcg. That is, your current dose of 50mcg is well below full replacement so increasing dose slightly should not cause a problem unless you have another condition like nutritional depletion.
Hello Eddie83, At my appointment with GP discussed the possibility of the moderate increase of levothyroxine you suggested and she was fine with that. I think small changes are good and can make a big difference. Thank you again for replying and advice. Kind regards Potter
Hi Eddie83, just curious about the calculation you've got there. So if I'm about 59kg, then my full replacement dose would be 1.7 x 59 = 103mcg. So, assuming I am still producing some of my own thyroid hormones, I could be on anything up to 103mcg? Just trying to get myself to the optimum level of meds, and this is an interesting nugget of info! Thanks x
I've seen estimates of the T4-only full replacement dose ranging from 1.5 to 1.7 mcg/kg. There seems to be some merit to the idea because it seems to work on me, when I add my T4 dose to my T3 dose multiplied by a power factor of 3. Going straight from zero to the full-replacement dose would not be a good idea, but I do think it's a valuable idea for any patient who isn't doing well because their (unknowledgeable) doctor is keeping them on too low a dose.
Knowing what I know now, after extreme experimentation and extensive reading (I can suggest a few medical journal articles and writings), I would strongly suggest that you make no changes in your dose for, at least one more month and preferably two.
In his ebook "Healing Hashimoto's: A Savvy Patient's Guide", Dr. Alan Christianson describes what he calls "drift". He says that when adding supplemental thyroid hormones, serum levels can continue to rise over the course of 12 weeks. The fact that you've seen a significant drop in TSH in just 4 weeks indicates that the exogenous hormone is having an effect.
Because no harm will come to you from a holding pattern and raising your dose too high and/or too quickly can be problematic, I would recommend holding at 50mcg.
If, after twelve weeks, your serum levels and TSH and symptoms indicate an increase is needed, I would recommend increasing by alternating 50/75mcg EOD, for an additional twelve weeks.
Though this might seem like an overly cautious approach, I believe that by being patient and making gradual changes in the beginning you might save yourself months, even years of suffering and struggle.
Others might encourage you to "demand" an increase or suggest that your blood test results show that you can add more hormone. But I have discovered that this is not a game of "How much hormone can I take?" And the rollercoaster of overmedication, the body's natural defenses against overmedication, confusing, overlapping symptoms, dose reduction, and chasing after hormone balance, is one ride I wouldn't wish on my enemy.
Hello roxanaleah, thank you for your reply. Yes I agree that too much too soon would not be good.This is a bit of a learning curve for me. I know so little about thyroid condition. But with the excellent and kind advice on this forum I feel I can go to doctor with some knowledge. I did get a small dose increase 12.5 mcg daily and will monitor carefully. I really appreciate your advice and being cautious is always the best way. I hope you continue to improve and keep well. Kind regards
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