I saw my internal medicine doc in January for a physical, the first in five years. He sent me for the standard battery of blood tests, which because I have Hashimoto's includes TSH and FT4. My TSH was 5.4 (0,4-4.5). His response was to keep me at my present T4 dose (125 mcg) and retest in three months! He seemed hurt when I insisted on seeing an endocrinologist, and more so when I rejected the one he usually recommends - a man of his (and my) generation - and said I wanted to see a younger, woman doctor who'd attended medical school outside the US.
He said he'd send her my test results but would not give me a referral unless the thyroid ultrasound for which he sent me showed abnormalities. Well, his description of the ultrasound image was, "Small thyroid, no nodules." Under my employer-sponsored insurance I don't need a referral to see a specialist, but the endo group requires one before they'll accept a paitient. I don't know what happened behind the scenes, but I received a letter saying I had an appointment for April 1 and a copy of another thanking my internist for his referral. I contacted the hospital where I'd had the US done to request the results be sent to the endo.
Unfortunately, my appointment was not with one of the two primary endo docs in the practice, but with a new member of the team. She's polite, professional and competent (the last according to standard practice in the US). She performed an "informal ultrasound" in the office, which she said confirmed what she saw on the earlier image. Unlike my internist, she noted that the left lobe of my thyroid is very small due to atrophy. She made it clear that she prescribes based entirely on the TSH level and aims for a TSH of 3.0. She ordered a repeat TSH test and said if it's still high, she'll raise my dose to 137.5 mcg. (I was unaware there were doses in increments smaller than 25 mcg.) She said there's no reason my internist can't manage my thyroid issues, but that she's willing to do so. He aims for the high end of the range, so I might be somewhat better off with her, but I think I can persuade him to lower the target at least to 3.0 and possibly, based on the scientific literature, to between 1 and 2. He respects my science degree even though I'm "not that kind of doctor."
I'm feeling discouraged and depressed knowing I'll have to fight for an effective dose of T4. Another doc in the endo practice is more flexible and patient-oriented than the one I saw; a friend who lost his thyroid to cancer three years ago said she's agreed to let him try NDT, and I found a patient recommendation for the doc on a US thyroid support site. But I'm probably stuck with the doc I saw if I go back to the endo clinic. Sigh.
I apologize for the long rant. I needed to get these feelings out to someone who I know will understand the frustration and worry. Thanks for being here.
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wombatty
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I know. That and my husband's assertion that I was developing a goiter (I'm not) are why I freaked out and insisted on seeing an endo. Unfortunately, in the US the general practice with hypothyroidism, including in Hashimoto's, is to aim for the high end of the "normal" TSH range - which different docs accept as various numbers between 4.0 and 5.0 (inclusive). Of course, that causes the antibody titers to rise and the autoimmune attack on the thyroid to recommence. I do not want to find myself on the "thyroid rollercoaster" that can ensue. I'm just hoping my internist, who does listen (although I think he considers me a hypochondriac), will let me get my TSH below 2.0 on the basis of some medical/scientific articles I've accessed on the Web. I can find nothing in the peer-reviewed literature to support getting it lower, although it is known that TSH and autoantibodies rise and fall in tandem - so it would seem the lower the better.
If you email louise.warvill@thyroiduk.org who has an article in Pulse Online (doctors' magazine) and it is questions with answer from Dr Toft, of the British Thyroid Association and also physician to the Queen when she is in Scotland. His answer to question 6 is important but please ignore his paragraph which follows and which Lyn Mynott, originator of Thyroiduk.org has written to refute his views.
Thank you. You recommended this article to someone else recently, and I emailed Louise immediately. It is informative and may prove helpful in persuading my doctor.
Yes, your frustration is understandable. Many of us feel better with a low or suppressed TSH . I am assuming the US above is ultrasound? you also say US which I think is the United States. I would be very wary if an Endo says she aims to fix the TSH at 3. That's the number when people are usually diagnosed in the USA, so why keep the TSH at 3 if you are on medication. That's a puzzle to me. In the UK, the number they give for diagnosing is a TSH of 10.
I hope your consultation goes well.
I see from the answer below that you are in the United States. This is an archived link from a brilliant person who went against all of the 'trendy modern' ways of diagnosing and treating patients. He was an adviser to Thyroiduk.org but he died two years ago due to an accident. Links within the topics (at the top of the page) may not work but you will get lots of valuable information.
I apologize for the confusion due to my using US to mean both United States and ultrasound.
I believe it was fairly recently (2012?) that the upper limit of the "normal" TSH range used in the USA was changed from 2.5-3.0 to 4.5-5.0 (varying among labs and doctors). The change is based on a couple of studies of good numbers of people classified as having normal thyroid function in terms of being TPO and Tg antibody-negative and some other parameters I don't recall - TSH levels, perhaps?
; >) A problem is that the bell curve has a long rightward tail, so a small number of individuals with high TSH values skewed the numbers. 95% of the subjects had values below 2.0, but the tail won out. I think 10 is the value for diagnosis of hypothyroidism here as well, but I may be mistaken. I was diagnosed with Hashimoto's 30 year ago based on a palpably enlarged thyroid and a radioactive thyroid scan, so TSH wasn't an issue.
Thank you for the link. The site is, indeed, informative. It's unfortunate that Dr. Lowe's book, Tyranny of the TSH, is no longer in print. It's also unfortunate that he is no longer with us.
wombatty have you thought about seeing someone who might consider treating you with something other than levo? I have friends in the States who have been treated with t3 and ndt via integrative physicians or nurse practitioners. I also have a friend who is on ndt - Armour - from her naturopath, though I believe it's prescription only so I assume the naturopath is also a physician or there is one in the practice.
I think traditional endos and gps are wedded to levo and you'll have the double job of being able to change their minds about wider methods of treatment as well as asking to keep your tsh lower.
There may be issues with your insurance but that depends on a number of factors.
In the 30 years since my diagnosis, I've never had a problem with levo. I am older now, though, and the balance of my other hormones has shifted, so perhaps adding T3 or substituting NDT would make sense. I'm inclined first to see how I feel once my T4 dose has been adjusted. Even if I don't need an alternative, I may have to see a different kind of practitioner just to get enough T4. Thank you for the suggestions; I definitely will keep them in mind.
This is what happened to my mother. She was on levo for 20+ years and was always active, worked full-time, etc, but in her 60s she was tired so her doc gave her a script for ndt and she has never looked back.
I've been seeing docs who treat me as if I'm a hypochondriac or as if there's nothing they can do for me, and I've spent so much time trying to change their minds that a couple of years have gone by now. I understand how this can happen. Just keep in mind that after a while you're sometimes dealing with diminishing returns.
In my experience, half the battle was knowing when to stop fighting with someone who has no intention of helping. I still don't always know the difference and it can take some time to know if a doctor's mind can be changed. Sometimes it can.
Good luck to you. I hope your levo increase works out.
It shows a graph of TSH distribution in a healthy population. Based on that I cannot see any justification for keeping your TSH at 3. To me it just sounds like the medics want to torture you on a long-term basis.
The graph was created from data taken from this study, which luckily is available in full and for free :
This curve in itself suggests that making decisions on TSH is flawed, as there is usually a bell curve for all naturally occurring characteristics - the curve has been drawn ignoring all those with negligible / unmeasurable TSH. If these had been included, the curve may very well conform to the usual bell shape.
The ideal TSH is between 1 and 2! 1 is ideal!!' 3,4 it is not good! It means your metabolism is very slow and you gain weight from the air!
I manage after 8 years to get mu TSH to 1,08! Have to say that I lived a broad and that the doctors are not that bad or not interested in helping their patients!
My endo as nothinh was working for me at least suggested some additional homeopathic medicine
I had another TSH 6 weeks afterwards, and it had dropped to 0.1! All I had done differently was to start taking my thyroxine in the morning, instead of at night, and avoid eating or taking my other meds & supplements for at least an hour. Not sure that's the cause of the drop; I may be on the Hashimoto's rollercoaster. My endo has reduced my levothroid from 125 to 112 mcg, and I'm to be tested again in another 6 weeks.
so before, for how long were you not eating after taking your thyroxine? I have to take them at least half an hour, a little more better, before eating and on an empty stomach, were you not doing that?
Well Wombatty, your example should make the other understand there is a reason why we are supposed to take thuroxine in the morning and not at night!!! But, right now your TSH is too low! If it 0.1 it means it is suppressed and you shouldn't be taking any of that medicine! But maybe you meant 1.0??? I hope!
But that's quite a big dosage for somebody who has an ideal TSH?
I am only taking 0.7mcg! And have the same TSH???
Watch out you don't go to hyper with such a high dosage???
I'd like to know what the reason is for taking it in the morning and not at night?
I am more than happy to accept that some people do better at night, others in the morning. But the mere acceptance of bed-time dosing as a reasonable alternative is one of the very few changes in patient treatment that has started to get more widespread attention this century. A small number of papers were published providing some evidence that taking it at night can be fine.
And this study suggests that your hormone levels improve with bedtime dosing and suggests that 'Clinicians should consider prescribing levothyroxine intake at bedtime.' ncbi.nlm.nih.gov/pubmed/211...
Sorry really fedup, I am not saying any nonsense and I am fighting this disease for years now and bet you I red mote
Books about it and I know more than most of the people here!
When your TSH is 0.1 it is called suppressed and that is the fact! T 4 snd T3 have nothing to do with it! Ask any endo in the world because I had that in the past! That's how everything started
in my case! So before you tell me I say nonsense check it out!
You do not have to have symptoms for years! Thank you!
Reny, this really isn't a competition about who has read more, or knows more. We can all share what has worked for us, and offer suggestions.
You can indeed still feel food in your digestive system long after a big meal, but your stomach itself is only about the the size of a fist, and does empty fairly quickly. But if you have found what works for you, then I am pleased for you
Well I never wrote to anybody that she or he is saying nonsense! So I do feel to defend myself!
And even when it comes to the stomach thing you are wrong, our stomach is not completely empty after two hours. Why don't you check some literature? How about that!
It is not a contest but before saying something people should check twice, that is my honest opinion!
One of the reasons we are supposed to take the medicine in the morning is very simple. We want to imitate the nature to get the optimum results from the medicine.
The thyroid gland produce the biggest amount of hormones when we woke up! The body temp. raise up, the pressure goes up, the body is waking up and the thyroid too produce the biggest amount of hormones! Let's not even talk about taking such a sensitive hormone on a 10/12 hours empty stomach and 2/3 hours "empty" stomach,it is just not the same!
Some people posted that human stomach is almost completely empty after only two hours but that is just not truth! If you had a heavy meal you can feel the food in your stomach for much more than 2 hours especially meat!!
Somehow I have feeling that switching the pill at night time it is a desperate temptation to change something and improve the situation but I just do not think that is the case!!!
Research never showed anything like that until today!
There is a very clear increase in FT3 levels in the middle of the night. It drops off from around midnight to late afternoon. (There is variation from one individual to another.)
FT4 levels move around a bit but are fairly steady all day.
Elsewhere it has been suggested that the maximum FT3 effect of a dose of levothyroxine is actually achieved around 48 hours after ingestion. Therefore, taking at bed-time might well achieve the same sort of FT3 peak as occurs in "nature" - but delayed by two days!
Although you appear to scoff at the empty stomach two hours after eating, I think the reality for many is something like that. Might not work if you have a heavy meal at, say, 20:00 and take your levothyroxine at 22:00. I typically have my meal around 18:00 and take my levothyroxine at around 23:00. (I might have something else in between but I do really think my stomach is usually fairly empty when I take it.)
The other thing is that I have repeatedly suggested that while this might work for some people, it most definitely is NOT a universal panacea. No-one should switch to bed-time dosing and stick with it regardless - only keep doing so if it works.
I think it should be followed what the farmaceuticsl company and the endo suggest! The farmaceutical companies do lots of test and research before they put something on the paper! As far as I know but I just recently moved to UK in other countries where I lived and it have been a few I never ever heard about taking that medicine at bed time. Maybe it is a practice here in UK!
I take my tyroxine early in the morning with little bit of water, than I wait 40 minutes before I have breakfast. As my liver is having a hard time converting T4 in T3 around 11 pm I have pure T3 in drops sublingual and the same at 3 pm!
All these instructions and medications I did not get in UK but in Germany. As pure T3 is giving me some intestinal problems I decided to see a new Dr. in London, who is specialised in Functional
Medicine and I met a person that who he cured from Hashimoto completely. She was thin, happy and full of energy!
I wan't to give a try! Of course it is a private clinic and quite expancive too.
Hope to write my positive experiance one day soon in this forum! PS. Even my appointment is only in July! That's how busy he is!
PS. I have been told by a Prof. who was taking care about my Hashimoto to avoid soya products while they neutralise thyroxine effects.
I wish you all the best with whichever thing you try.
The idea of taking at night has been around for a very long time. We have some members who have been doing so for many years. However, it is in the last few years that papers have been published which support it.
We even have some people who even take their T3 at night. The late Dr Lowe would take his own T3 at night, the full dose. He absolutely thought it best for him.
I don't think it is at all a UK thing - maybe English-language websites and groups have discussed it more? I don't know.
Sources for NDT? I'm not yet ready to try it: I'm still willing to see where my endo takes me. I also read recently that while it may be the best treatment for other types of hypothyroidism, it can exacerbate Hashimoto's. Thank you for the offer, though.
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waste of time
Saw the Endo yesterday...
waste of my time Endo!
Endocrinologist says testing waste of time
