TSH dropped from 5.4 to 0.1 in 6 weeks with no intervention except changing when levo taken. Does this make sense?

Endo called today (Sunday) to give me my latest TSH results, etc. My TSH six weeks earlier had been 5.4, which was my primary reason for seeing an endo, as my internist planned to keep me on the same levo dose for another three months and retest. Well, in the interim my TSH has dropped to 0.1! The endo asked whether I'd changed anything about the timing or circumstances of my taking levo. Since I've been following this community and reading everything I can find online about Hashimoto's/hypothyroidism, I have switched from taking levo at night - often not long after eating or drinking something caloric and/or followed 1-4 hours later by antacids - to taking it in the morning on an empty stomach about an hour before eating breakfast and taking my other meds and supplements. Can that really make such a huge difference in TSH?!? I am on the generic Levothroid, whose dosage supposedly is not as well-controlled as that of the USA gold standard, Synthroid. The endo plans to reduce my dose from 125 mcg to 112 mcg and recheck my TSH in six weeks. At least she won't make me wait three months! I'm still suffering with painful joints, muscles and tendons, brain fog and assorted other symptoms. Can those persist after one's TSH drops so precipitously? Perhaps it takes time for the damage to repair?

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  • By taking your medication on an empty stomach and waiting a period of time before eating, it gives the best chance for the uptake of levothyroid into your system. I think that's the most feasible answer. I, myself, take supplements etc 4 hours afterwards, iron in particular can also interfere with the uptake.

    I would be wary of your Endo adjusting your dose according to the level of your TSH. I know many do this believing too low a TSH may give heart problems etc, but there is no scien tific evidence for adjusting. In fact, many patients feel much better with a suppressed TSH. If it is possible for you to add some T3 to your T4 it may benefit you. Adjusting doses according to the TSH can mess up your metabolism, and it's our metabolism that's badly affected by hypo.

    I know in the USA they are not keen on prescribing Natural Dessicated Products like Armour Etc.

    Some links for you. We have to read and learn as much as possible in order to recover our health. Any links to Dr Lowe are archived so some links within these may not work.

    web.archive.org/web/2010103...

    There are more topics at the top of the page in this link i.e. armour etc. Excerpt

    Most endocrinologists restrict their hypothyroid patients to T4-replacement. But no hypothyroid patient today has to settle for this inferior and dangerous treatment. Thousands of doctors not on the take from Abbott now offer safer and more effective thyroid hormone therapies. For your own health and well-being, I encourage you to find one of these other doctors.

  • The TSH responds to the medication before everything else. The Pituitary Gland , which is where the TSH - Thyroid Stimulating Hormone - is produced, is more sensitive to Thyroxine than any other part of the body. That's why it responds first. When it comes to what is happening in the rest of your body, the response is much slower.

    That is why fiddling with the dosage on the basis of the TSH is wrong. You need time to make sure that the thyroxine which is in your bloodstream is being used in the right way by the rest of your body, and not just circulating around doing nothing.

    I had a suppressed TSH but still had horrifying signs and symptoms, although my GP was happy with things the way they were, refusing to consider that the thyroid situation was not right. In the end a private blood test proved what I had always suspected - that all the T4 - or most of it - was just doing nothing. It was there, in my blood, but something stopped me from converting it to the active hormone, T3.

    Even with the evidence in front of him he refused to accept that the TSH was not giving the correct picture, but that's another story for another day!

    The fact is that, once you are taking medication, the TSH is not a reliable guide to how you are doing. There are many other facors which can also affect how you deal with the tablets you are taking. You need to have Vitamins D and B12 checked, and make sure that you are not anaemic (iron/folate/ferritin) as well. Deficiencies in any of these can stop you converting the Levothyroxine into T3, and so you remain with symptoms despite the TSH being lower.

    Marie XX

  • Hi Marie, I just had a lightbulb moment reading your post, thank you! It seems to explain what's been happening with me over the last 12 years or so of treatment, suppressed TSH, high T4, eg - TSH 0.02 mu/L (0.36 - 4.1), Serum Total T4 190 nmol/L( 65 - 155 ).For years I couldn't understand why I still had so many symptoms, particularly mass weight gain and awful oedema. But where do I start to correct it all. Arrgghh, nightmare. xx

  • I found I got no better on T4 and got to 0.05 TSH with no improvement (brain fog and no energy). GP and Endo agreed to try T3. I reduced T4 and started T3. Rapid improvement in mental fog which just lifted and better energy but still short. Learned that T4 to T3 problems can mean reverse T3 (rT3) is created which blocks normal T3 from getting into cells to generate energy. Endo agreed to trial T3 only and bingo - everything changed in days! Wife said 'I got my husband back'. Now near normal for 18 months. Hope this helps.

  • That's really helpful T3sm, thank you. I feel a trip to my GP coming on!

  • Reading your reply for Wombatty has made a lot of facts fall into place Marie,explaining why our GPs' reliance upon TSH readings is obviously wrong and no confirmation of what is going on in the rest of the body or what the circulating T4 is doing.

    You have summarised facts in such a way that can be easily understood ..........hopefully even by our GPs! ......Many Thanks X

  • Wombatty I also wonder if damage to the muscles and tendons take time to heal?????? I started with a tsh 95.58 range 0.40-4.50 and creatine kinase 626 range 29-143.....So I was thinking it must take awhile for things to repair. As they are still adjusting synthroid meds for about a 15 months now. I feel about 75% better. But my legs still ache. Right now I am on 100 synthroid and my tsh is 1.52 range 0.40-4.50 and t4 free 1.2 .....range 0.8-1.8........ 6 weeks ago tsh 6.77 and t4 free 1.0. I am going to be checked again in like 5 weeks. Let me know if anyone thinks it could be damage or is it just part of the whole mess....sorry this is so long! Wish the best for you!

  • Thank you all for your input. As always, shaws has provided a link to excellent information.

    I suspect that, indeed, the damage will take time to heal. It took three years for the damage from a twisted hip to get better on glucosamine/chondroitin/MSM, and it still twinges occasionally if I miss my supplements for several days. The present situation may be similar.

    I may have neglected to mention that, although my internist described my ultrasound results as "small thyroid, no nodules," the endo told me that the left lobe of my thyroid is VERY small, having atrophied almost completely. This suggests to me that the autoimmune process has been active, and thus that I may be on the Hashi rollercoaster: immune attack kills part of thyroid, T4 drops, immune attack slows or stops; then TSH rises, thyrocytes try to replace lost tissue, T4 rises (sometimes to hyperthyroid levels), immune attack resumes and the cycle repeats. To my knowledge, the only way to stop this vicious cycle is with a high enough dose of T4 to totally suppress the thyroid, and doctors in the US won't do that (except in thyroid cancer patients) because they're afraid of causing a heart attack or osteoporosis.

    The Synthroid Web site and a pdf I downloaded there mentions in passing that TSH should be suppressed in Hashimoto's. I've requested peer-reviewed references from the site supporting this assertion. I don't know how open to reason my endo is, but I'd like to have solid evidence to share with her.

    My research has indicated that conversion of T4 to T3 occurs primarily in tissues other than the thyroid. The efficiency of this conversion can vary greatly from person to person. Even as a child, I had little energy; my mother said I had two speeds: slow and stop. So I may have a conversion problem unrelated to the Hashimoto's. Unfortunately, unless a doc is willing to base treatment on a patient's symptoms rather than on TSH levels, one's chances of getting a prescription for T3 or NDT is hopeless. My endo is new to the practice; as the doctors discuss their cases among themselves, perhaps she'll mellow in time. I have a friend who had thyroid cancer three years ago and sees another doc in the practice who has agreed to let him try NDT, so there is flexibility there. Fingers crossed.

  • Wombatty, are you saying your were had a starting dose of 125 mcg. and have taken it for six weeks to arrive at the new lower TSH? That would be a very strange treatment. But, if you are saying you started at 50 mcg. and raised it every two weeks to 125 mcg., that makes more sense and is more plausible. I think many of your symptoms can occur while beginning treatment and I'm not sure lowering your dose at this point is necessary or even a good idea. There are many factors at work.

    I've taken medication at different times and it's said to remain consistent with whatever you choose. I would say the accumulation of hormone over six weeks is what lowered your TSH.

  • I was diagnosed with Hashimoto's 30 years ago. I've been on various doses (ranging from 100-300 mcg) over time, but have been taking 125 mcg levo for a number of years. Hadn't been tested in 5 years (my fault) when I was found to have TSH of 5.4. Saw endo 6 weeks later, had TSH redone, it was 0.1. She thinks the changes I've made in when I take my T4 may account for the drop, although I thought her tone and facial expression seemed doubtful.

  • Yes, I really doubt that as well. I've been posting these videos which are 5 minutes and well worth watching. He points out many, many complications of thyroid disease. This is #9 which may explain it if you can relate to any symptoms. It certainly would account for why your dose has gone from 100 to 300 at some points.

    Attack on TSH receptors.:

  • Thank you! I've bookmarked the facebook page with Dr Clark's videos so I can view them at my leisure.

  • You didn't mention whether you are feeling any symptoms and you probably can't get the correct testing which is unfortunately what has happened with social medicine but there may be things you can do yourself. Best to you.

  • Thank you for your kind wishes.

    I've got an assortment of symptoms that are associated with hypothyroidism, including several that I only recently learned might be related. When the endo asked me which of my symptoms are of greatest concern, my answer was the persistent swelling of my hands and feet and the brain fog (although I didn't call it that). But I also have the fatigue, muscle pains (sometimes cramps), joint pain, brittle hair, dry skin....Only very recently have I begun feeling cold again after the menopause-related excess warmth that I've experienced for over a decade.

    In the US, insurance companies and Medicare/Medicaid don't put up much of a fuss about testing (even when they probably should). A doctor can order any blood test s/he considers necessary and get the results within a short time. Persuading the doc that a particular test is necessary can present a hurdle, however.

  • The important reading is the thyroid hormone itself. Did they do an FT4 test? Doubt whether they would have tested for FT3.

  • I did have FT4 done the first time. FT3 was not done either time. The endo didn't order FT4 with the second TSH, but my testing lab automatically does it if the TSH is out of range - so she probably got the results but didn't share them with me. I should call her office and ask her assistant if she got the FT4 as well. I'm bothered that she doesn't seem interested in my FT4, FT3 or antibodies vs. TPO and thyroglobulin. Well, when I'm retested in 6 weeks, maybe the TSH will be high again. Then maybe she'll look at the other numbers.

  • Did you take your medication prior to your blood test? This can give an incorrect reading, with your other symptoms sounds wrong!

  • No, I did not take my levo before the blood draw.

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