Hi guys. This is a very interesting board! I've read through many posts but can't seem to find quite what I'm looking for. Maybe you could direct me to some older threads or answer this one?
My question:
What sorts of things affect TSH when you don't have a thyroid at all?
My situation:
Thyroid removed with non-Hodgekins Lymphoma in 1996.
After some trial and error, we got my TSH levels to stay around 1 - 1.5 and I felt GREAT fro several years!
Then it dropped to 0 and the GP missed that (on vacation). Heart troubles and such. Got it back up, but too high, increased meds and back to a lovely 1 again for a few more years.
Jan2009 TSH + 2.5. BTW GP only wants to check every 6 months. Sooooo by July it's over 5 and I feel BAD. Up the dose of Synthroid and by September I am at 1.2. Yipeeeee. Symptoms gone
I got another check one month later and TSH = 4.2! I feel mostly okay. GP says variations are normal. The GP I saw when my main guy was on vacation says they are NOT. What to do? Who to believe?
BTW, the last test (TSH=4.2) was done at 7 am. The one a month before (TSH=1.2) at around 9 am.
GP also occasionally checks free T4 and FSH and worries most about those numbers. I'm afraid I don't remember them and don't understand them. I can go next week and get my records for the last several years if it will give me info I need.
It's correct that TSH can be very variable and that's why we go by the free T3 and free T4 levels to guage where we feel the best. If you have any records of what these levels were when you were feeling good then this gives you something to guage things by. Most feel best when FT4 is above 50% of range and FT3 up in the top third of range, but it's an individual thing.
It also could be that you are not able to be stable on T4-only meds anymore. Not everyone can stay on them long term and many find they develop adrenal fatigue or an inability to get optimized due to the fact that your body is forced to convert all the T3 it needs. Ask your doc about adding some T3 to your meds, either synthetic or by going over to natural desiccated thyroid horomones like Erfa Thyroid.
Also have you had your vitamin D, B12 and ferritin levels checked? These are often low with hypothyroidism.
Are you taking your medication consistently, in the same manner, at the same time? Are you on generic or brand? I would recommend:
1) Make sure that it is the same amount of liquid, time before meal, etc. that may affect absorption. Once you are consistent with your levothyroxine intake, give it 3 months and re-check bloodwork.
2) put yourself on a brand name, like Synthroid, or other brand, whatever you and your doctor chose. Brand may be more expensive, but they have precise dose in each pill, while generic is known for slightly varying dose in different batches.
3) after 1) and 2) were satisfied, check your bloodwork every 3 months, and when you are stable (when the variations are within our beloved normal range), check your numbers every 6 months.
P.S. I just saw you are taking Synthroid, it is ok. What is your dose?
Last edited by Summer2928; 11-13-2009 at 05:52 PM.
It's correct that TSH can be very variable and that's why we go by the free T3 and free T4 levels to guage where we feel the best. If you have any records of what these levels were when you were feeling good then this gives you something to guage things by. Most feel best when FT4 is above 50% of range and FT3 up in the top third of range, but it's an individual thing.
I will go next week and get my records for the last few years. Th eGP rarely asked for free T4 and other tests.
Quote:
It also could be that you are not able to be stable on T4-only meds anymore. Not everyone can stay on them long term and many find they develop adrenal fatigue or an inability to get optimized due to the fact that your body is forced to convert all the T3 it needs. Ask your doc about adding some T3 to your meds, either synthetic or by going over to natural desiccated thyroid horomones like Erfa Thyroid.
I've been on the synthroid for 13 years and, of course, will need it forever. This is worth looking into. How would one know it is needed though?
Quote:
Also have you had your vitamin D, B12 and ferritin levels checked? These are often low with hypothyroidism.
I have been supplementing all these for several years and more carefully in the last 6 months. I'll also see if the blood work done last spring looked at any of these levels.
Are you taking your medication consistently, in the same manner, at the same time? Are you on generic or brand? I would recommend:
1) Make sure that it is the same amount of liquid, time before meal, etc. that may affect absorption. Once you are consistent with your levothyroxine intake, give it 3 months and re-check bloodwork.
Interesting! I do try but might not be as consistant as I thin kI am
I take the dosage (currently .125) with 1/2 cup water about 20-30 minutes before breakfast.
Quote:
3) after 1) and 2) were satisfied, check your bloodwork every 3 months, and when you are stable (when the variations are within our beloved normal range), check your numbers every 6 months.
My GP gave me papers for 3 month checks for the next year, but he only asked for TSH. Should I request a change? Or if I'm feeling okay, just leave it lie?
Another GP I saw this summer said TSH was the only number to look at and the others varied too much to be useful Man, this is confusing.
As long as you are doing the same routine every day, it can be considered consistent. So, let's see what will show up in your bloodwork next time. If TSH is above the range, I would raise the dose one pill up (137), and repeat bloodwork in 3 months. Try to keep TSH in low-normal or middle-normal range. The doctors do not normally recommend to keep TSH above the range, even if you feel well. Because of cholesterol and other issues.
As for what to test, I know for sure one thing, that T3 and T4 do vary considerably, and, in addition, the technology itself is not precise, there is a high % of error while measuring T3 and T4. That is why many GPs just ignore those tests. TSH changes more slowly, it is a retrospective indicator, shows an average picture within last 2 months. And the technique itself is more reliable, margin of error is considerably small. When your thyroid is not working, or you have no thyroid, normally, the doctors check TSH or TSH+T4. The logic behind it is: because your thyroid is not producing T3, there is no point of checking it. It usually changes in the same direction as T4. T3 is particularly important for those who OVERproduce thyroxin, becasue they become thyrotoxic, and it is dangerous.
Some people, though, for some reason, do not do well on T4 replacement only, they add Cytomel (T3) in their replacement therapy. In this case, probably, the doctor would check T3 & T4.
So, it is basically up to you. If you are doing well, I would suggest to check TSH + FreeT4 at least once a year, and check TSH every 3-6 months. If you feel unwell, though, further testing may be needed.
By the way: what is non-Hodgekins Lymphoma? If it is a sort of cancer, then you may need suppressive therapy, keep TSH low. You should check with your doctor.
I guess I will have to disagree with this statement:
Quote:
I know for sure one thing, that T3 and T4 do vary considerably, and, in addition, the technology itself is not precise, there is a high % of error while measuring T3 and T4. That is why many GPs just ignore those tests. TSH changes more slowly, it is a retrospective indicator, shows an average picture within last 2 months. And the technique itself is more reliable, margin of error is considerably small.
As you can see, thyroid treatment and testing is a controversial subject . But I will explain my take on this, based on my own research and treatment choices.
Free T3 and Free T4 are considered by many to be the best tests to monitor the levels of thyroid hormones circulating in the bloodstream and are the tests my own doctor uses above the TSH. Yes, many doctors will only use TSH to both diagnose and monitor treatment for hypothyroidism, but those same doctors tend to leave many of us hypo for a good long time, if not forever. TSH does vary considerably in an individual depending on time of day, season, lifestyle or diet changes, etc. Trying to keep a person in "normal range" of TSH is often not compatable with good thyroid treatment and relief of symptoms and many of us with optimal thyroid treatment have a very suppressed TSH, well below range. But knowing where your free T levels fall in their ranges, despite any number the TSH test comes up with, will help determine when more or less thyroid hormones are needed or if T3 should be added to the treatment. So I suggest you get a copy of your labs and post the Free T4 as well as the ranges so we can see where you fall.
Hi javelina! I knew you had another opinion. I mentioned, by the way, that if you have problems, further testing may be needed. I do not fire T3 and T4 altogether, and get mine checked every now and again. I am just not fixated on them, as I read somewhere, (especially T3), that margin of error may be up to 20%.
If you test Total T4 and T3 then you do have a large margin of error - those tests are useless anyway since they don't tell you how much of them is actually available for use. But when you test those FREE levels you do get a accurate level. When on T4/T3-treatment TSH becomes absolutely irrelevant (because it's unmeasurable) and many on plain levothyroxine have a low TSH too. Then one has to keep up with those free thyroid levels.
Summer - Yes, I had cancer, but HAD is the word :-) chemo, radiation, the works. I also went into menopause early (in my 40s as a result). I'm 54 now so there are no other hormones messing me up. I do see seasonal changes in my energy levels and suspect diet and other issues are connected.
I'm SO curious now to see what my history in 'numbers' is. Im going to look back and note when i felt good and poorly BEFORE I look at the numbers too.
Finnmaid:"When on T4/T3-treatment TSH becomes absolutely useless and many on plain levothyroxine have a low TSH too."
Confused - do you mean the number is low or the level of meds are low (number high?)
Finnmaid:"When on T4/T3-treatment TSH becomes absolutely useless and many on plain levothyroxine have a low TSH too."
Confused - do you mean the number is low or the level of meds are low (number high?)
I mean people on sufficient T4/T3-treatment usually have an unmeasurably low TSH - in some cases plain levothyroxine makes TSH low even if the medication is insufficient for that particular individual - so TSH may really tell us very little in itself. If one is stable and feeling fine then it really doesn't matter what those labs are saying but IMHO TSH is not the best tool for the fine tuning of one's medication because it tends to have "a life of it's own".
hugahorse, I was asking because post-cancer treatment often require suppressed TSH to prevent recurrence. I am not sure for how long, though. Maybe, in your case you no longer need suppressed TSH, something to ask your doctor.
back again - finally. It took a while to get to the office and get the papers photocopied.
On the question above on cancer follow-up. There has never been any mention of any issue with this as I am considered cancer free - yay!
Now for the numbers. Man, was I surprised at how many times it was flagged by the lab as above range and he didn't tell me. !
What I decided to do BEFORE I looked at the results is plot my "health status" for the last five years (I reviewed significant incidents and photos to help remember how I was feeling at the time) I rated my overall 'health' (mainly physical and mental energy levels - bad drepression was an issue a few times).
1 = can't get out of bed and 10 = feeling great.
Then I plotted all the numbers (my health status, TSH, free T4, and the amount of synthroid) on a graph to see the relationship. Sound like kinda scientific? Well, that's my job
I attached a link to the chart below. Thing I noticed was how I was in a bad way a month or so after the TSH number was higher. So I might have said at the Dr's appointment that I felt fine then. And since I only went every 6 months as a rule, I never connected the depressions and such with the levels. Hmmmm. Got to try to stay ahead of the curve from now on.
What do you think of the free T4 levels? Do they mean anything? The higher freeT4 numbers seemed to freak my Dr out at the time.
< edited >
Last edited by hb-mod; 11-27-2009 at 12:20 AM.
Reason: Please don't post links to pictures, or images, per posting policy. Thanks!
Here's a table of the numbers instead.
(oops, this forum won't hold any formatting like spaces and such. I have no idea how to show you the data in a way that makes sense )
forget to add lab reference ranges:
TSH 0.27 - 4.20 mU/l
free T4 12.00 - 22.00 PMOL/l
Note - I never had any consistency in what time of day the tests were taken
1999 to 2004 on .125 Synthroid - doing really fine
2004
June, TSH= 0.02
had heart problems
October, TSH= 0.03 and freeT4= 20.2
switched down to .100 Synthroid
November, TSH= 0.23 and free T4= 13.7
December, TSH= 0.76 and free T4= 12.5
felt great
2005
May, TSH= 1.4 and free T4= 21.4
June, TSH= 1.55 and free T4= 16.2
October, - still feeling great
December, TSH= 2.51
not feeling quite myself that winter
2006
May, TSH= 1.8 and free T4= 19
October, HIGH stress
November, TSH= 8.52 but still feeling okay
December, TSH= 5.2 and free T4= 15.9
feeling ‘slow’!
2007
May, TSH= 3.6 and free T4= 15.9
not quite myself
August, feeling okay
November, TSH= 10.42 and free T4= 12.9
REALLY feeling LOW and had to argue HARD to get more Synthroid!
Swtiched to .112 Synthroid
2008
January, TSH= 4.8 and free T4= 15.8
not doing well
March, VERY low, bad depression, fatigue, etc
May, TSH= 1.45
June was much better
July, TSH= 2.19
September, doing pretty good
all fall – HIGH stress – death in the family
2009
January, TSH= 4.06
NOT feeling well at this point. Argued but Dr. would not raise my dose.
May, really not well – MANY symptoms of hypothyroidism all spring and summer. Worst ever, even before the surgery.
July, TSH= 4.94 and free T4= 16.2 increased meds to .125 (saw a different Dr. when mine was on vacation)
switched to .125 Synthroid
started feeling better by September
September, TSH = 1.23
October, feeling pretty good!
November, TSH= 4.29 ?? why up again? Dr says it came fluctuate like that due to other variables. Hmmmm. I NEVER want to go back to how my body and brain was the past year!
So I’m being VERY consistent about taking meds and will do the blood work same every time and see what comes up next. Dr only gave me papers to get the TSH checked every three months, but NOT the freeT4.
Last edited by hugahorse; 11-27-2009 at 08:21 AM.
Reason: forget to add lab reference ranges
Well as you can see in this post, we don't all agree about the usefulness of the TSH for monitoring thyroid treatment. I was left hypo for well over 15 years because of the TSH so I"m particularly unfond of it .
I also don't think that using only the FT4 is all that helpful either as it's the amount of free T3 that shows just how much the active thyroid hormone T3 you have circulating. There are many who don't convert T4 to T3 effectively and that's why it helps to know those FT3 levels. It would also be useful to have a reverse T3 run to see if you are converting T4 to RT3 insead of T3, as this too interferes with treatment. And lastly it's good to assess your adrenal fuction with saliva cortisol testing, if you've been under high stress often the adrenals take a beating and low cortisol will prevent T3 from entering the cells. .
If you like your doc and want to stick with him despite his use of mostly TSH to monitor your treatment that's your choice (and having to argue to increase your dose with those high TSH levels is pretty unfortunate IMHO), but if it were me and my doctor refused to consider adding T3 to my treatment protocol or to monitor me with some other testing if I couldn't seem to get my levels right, I'd look elsewhere.
Thanks for the advice and info, javelina. I'm definetely learning stuff here.
as for my Dr., I'm in small town, Canada, and I have been told to my face by another doctor that one can not change GPs around here. Even if I tried, there are just no other Drs taking on new patients. That is why I decided I had better learn more so I can start asking for the tests I need when I need them. It'll be intersting to see what comes of this. He is not a nice Dr. OR that good, I'm told. But I'm stuck for now.
Can you travel to a bigger city to find a doc, Halifax maybe? Many of us have to travel long distances to get good care, even here in the US. Some docs won't even order tests we request if they are really on their high-horse. Endos tend to be the worst we've often found. But do what you can with what you've got to work with. You shouldn't be forced to suffer with poor thyroid repacement treatment. Also your country manufactures a really excellent natural desiccated thyroid called Erfa Thyroid and it might be a far better treatment than the synthetic T4 for you. Good luck to you!
. Should I request a change? Or if I'm feeling okay, just leave it lie? 
)
