# What's going on with my TSH?



## Fissy (Sep 20, 2011)

Hi everyone, happy holidays. 

I have a couple of questions in regards to my hypothyroidism. It's being rather stubborn and doesn't seem to want to controlled very easily. I would really, really appreciate any ideas anyone has!!

A bit of backstory.. I'm 27 and I was dx'd with hypothyroidism back in August with a TSH of 274.10 (0.50-4.00) and an FT4 of 0.2 (10.0-19.0) and put on 50 mcg of thyroxine a day which I responded well to. It was caused by Hashimoto's and my endo suspects after looking at my thyroid u/s that my thyroid doesn't work anymore due to the amount of thyroid tissue destruction. 
My current meds are metoprolol 25 mg twice a day for tachycardia, fludrocortisone 0.1 mg for hypotension/hypovolemia, slow release potassium, 4x vitamin D for deficiency and b12 shots for b12 deficiency. I take my thyroxine 30 minutes after my morning beta blocker, an hour before food and at least 3 hours before any other medication.. this schedule was set up for me by a pharmacist so hopefully nothing there conflicts. I have postural orthostatic tachycardia syndrome/dysautonomia. It's not an endocrine problem and is probably unrelated (I think!).

I've had two thyroid ultrasounds, have no nodules, no goitre, no Grave's disease, no TSI and an MRI shows that my pituitary gland is normal. Anti-Thyroid Peroxidase is >1300 (<60) and Anti-Thyroidglobulin is 324 (<60).

Alright! So, the most recent test results I have are from mid November. TSH was 13 (0.50-4.00), Free T4: 16.4 (10.0-19.0) and Free T3 was tested but I forgot to write down the number although I remember it being in high range. My endo increased my thyroxine from 350 mcg a week to 450 mcg a week and I was to get retested in a month. I got a thyroid panel done this week and he called me the day after to tell me to increase my dose to 525 mcg a week (75 mcg a day) because my TSH was 18 then to do another thyroid panel and see him in 4 weeks. FT4 and FT3 remained the same. I told him I'm not symptomatic, that I actually feel the best I've felt in weeks and he said I probably don't feel symptomatic because my FT3 is still at a great level.

A doctor who was investigating my tachycardia (before they discovered what was causing it) wanted to try me on T3 only meds but endocrinology refused due to the fact that my T3 was already on the high side and that it might make my tachycardia worse. I guess this probably rules out desiccated thyroid too?

My main question is, why is my TSH increasing after almost getting back down into range if my FT4 and FT3 are high and why is my endo worried about it? Isn't TSH supposed to go down when your T4 and T3 get higher? I'm getting worried about my increasing thyroxine dose and T3 level because of my tachycardia. I can't take a higher dose of beta blockers because I have low blood pressure and my HR is starting to get too low when I lay down. I trust my endo but I just don't want to keep increasing my T4, especially if it's not working. Is there anything I can do if this dose increase doesn't work? I'm really lost and getting pretty desperate. I want to get my thyroid under control so I can focus on my other health issues. I'm totally out of ideas. :sad0049:


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## Octavia (Aug 1, 2011)

If your thyroid truly is not working at all (or very little) anymore, as your doctor suggests, then you are on a very lowe dose of thyroxine. I suspect your dose is too low AND your remaining "active" thyroid tissue might still be dying off, and the combination of those two things would result in TSH increases.

As a point of comparison, many of us with no thyroid left (surgically) are taking 125 to 175 mcg of thyroxine every day.

Does what I'm saying make sense with what you're experiencing?


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## Fissy (Sep 20, 2011)

Octavia said:


> If your thyroid truly is not working at all (or very little) anymore, as your doctor suggests, then you are on a very lowe dose of thyroxine. I suspect your dose is too low AND your remaining "active" thyroid tissue might still be dying off, and the combination of those two things would result in TSH increases.
> 
> As a point of comparison, many of us with no thyroid left (surgically) are taking 125 to 175 mcg of thyroxine every day.
> 
> Does what I'm saying make sense with what you're experiencing?


Thank you so much for answering! 
It makes great sense. I was even told that I probably had transient hyperthyroidism in the past so I should have thought about it still being around. :ashamed0005:

So I shouldn't be scared to take more thyroxine? I'm mostly concerned about it affecting my heart rate since it can get up to about 180 bpm if I stand up on a bad day as it is.
Mmm, I've always wondered about my dosage too. Endo's reasoning was that it's because of my small build and drug sensitivity but I take less than half of other people with little to no function. It was brought up to 100 mcg at one point but that lasted a grand total of two days before it was brought back down to 50.


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## joplin1975 (Jul 21, 2011)

I can't comment on the vast majority of your post, but did want to note that switching from 100 to 50 is a pretty large drop. Is there any reason you were asked to try either 75mcgs or 88mcgs?


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## lainey (Aug 26, 2010)

My personal experience having an arrhythmia/tachycardia combo is that doctors become very fussy about the T3, especially if you are taking rate-control drugs. T3 medications can be more dangerous for you in those situations than in other people, and doctors will prefer to avoid them.

There really is no problem dosing based on the Free T4 and T3. Those are the active hormones, and provide a truer picture of your thyroid status than the TSH.

People who have very high TSH levels on diagnosis as yours was, in my experience, often experience difficulties bringing it into "range"--ie they experience hyper symptoms long before their TSH is low. Remember, TSH is a curve over which there is a wide variety of normal--it could be that a TSH of between 5 and 10, with your frees up in the range as they are, could be quite normal for you.

TSH will also vary based on your overall hormonal status and general health. Small deviations over time are pretty normal.

What matters is that you feel well.


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## Andros (Aug 26, 2009)

Fissy said:


> Hi everyone, happy holidays.
> 
> I have a couple of questions in regards to my hypothyroidism. It's being rather stubborn and doesn't seem to want to controlled very easily. I would really, really appreciate any ideas anyone has!!
> 
> ...


If your TSH is high, that too can cause tachycardia and arrhythmia.

Wonder what would happen if you were to wean off the beta blocker? I am thinking it may be interferring with the natural order of things. Are you on other meds?

Also, at this point it may be very wise to seek out another doctor. Something is not right, that much I know.

And then if I recall correctly, you do have some antibodies and immunoglobulins, don't you?

Can you refresh our memories here, please? I feel like I am looking at only half of the story! LOL!!

Hugs,


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## Fissy (Sep 20, 2011)

joplin1975 said:


> I can't comment on the vast majority of your post, but did want to note that switching from 100 to 50 is a pretty large drop. Is there any reason you were asked to try either 75mcgs or 88mcgs?


I'm not sure, sorry. I was complaining of chest pain at the time (ended up being unrelated) so maybe that may have made them a little more cautious than usual?


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## Fissy (Sep 20, 2011)

lainey said:


> My personal experience having an arrhythmia/tachycardia combo is that doctors become very fussy about the T3, especially if you are taking rate-control drugs. T3 medications can be more dangerous for you in those situations than in other people, and doctors will prefer to avoid them.
> 
> There really is no problem dosing based on the Free T4 and T3. Those are the active hormones, and provide a truer picture of your thyroid status than the TSH.
> 
> ...


Thank you, lainey.

I'm glad that I shouldn't have to worry about being put on any T3 meds then.
I think the lowest my TSH managed to get to about 6-8ish then crept back up when I was having trouble with my health again so there is that for sure! I feel well enough thyroid wise though so I'm probably just worrying needlessly. Was hoping my endo would hand me back off to my GP soon but I guess I'm not quite there yet.


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## Fissy (Sep 20, 2011)

Andros said:


> If your TSH is high, that too can cause tachycardia and arrhythmia.
> 
> Wonder what would happen if you were to wean off the beta blocker? I am thinking it may be interferring with the natural order of things. Are you on other meds?
> 
> ...


Hi Andros, I have a strange disorder which only causes tachycardia when I'm upright. My supine HR is always under 90 bpm. I was diagnosed with this after spending about a week and a half as in inpatient for investigation. When I presented at Emergency, they rushed me into resuscitation because they thought I was in thyroid storm because my tachycardia! But it was ruled out pretty quickly. I'm not going to list all my dysautonomia symptoms otherwise I'll be here all night, LOL. Thyroid wise, I have Hashimoto's which was dx'd around August.

Unfortunately I can't stand up for long without taking a beta blocker at the moment because the tachycardia really knocks me around. I'm hoping I can go off them some day. I'm up and walking around now though so I improving, not sure if it's cause of the meds or not though.

I'm on Florinef for low blood pressure/volume, potassium because Florinef can deplete it, lots of vitamin D and B12 shots every few weeks.

Antibodies and all that good stuff:
Anti-Thyroid Peroxidase is >1300 (<60)
Anti-Thyroidglobulin is 324 (<60)
I have no TSI, yay. It's even been tested twice now.

I've seen three endocrinologists (a neurologist I was seeing wanted a second opinion on my thyroid, another saw me while I was in A&E and the endo who sees me now as an outpatient) and both say I have Hashi's and they can't find anything else. I also see other specialists for my dysautonomia. I'm not sure who else to see. 

I hope that is enough of the story! It's been a rough year but hey, I'm still here at least! Here's to a better 2012!


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## Andros (Aug 26, 2009)

Fissy said:


> Hi Andros, I have a strange disorder which only causes tachycardia when I'm upright. My supine HR is always under 90 bpm. I was diagnosed with this after spending about a week and a half as in inpatient for investigation. When I presented at Emergency, they rushed me into resuscitation because they thought I was in thyroid storm because my tachycardia! But it was ruled out pretty quickly. I'm not going to list all my dysautonomia symptoms otherwise I'll be here all night, LOL. Thyroid wise, I have Hashimoto's which was dx'd around August.
> 
> Unfortunately I can't stand up for long without taking a beta blocker at the moment because the tachycardia really knocks me around. I'm hoping I can go off them some day. I'm up and walking around now though so I improving, not sure if it's cause of the meds or not though.
> 
> ...


Thanks for the info. Much easier to stick to one thread for those of us that need that important info!

Well, you know already what thought process I have contributed. Cancer should be ruled out due to those outrageously high antibodies.

And your diagnosis of Hashi's is based on FNA whereupon Hurthle Cells indigenous to Hashimoto's were identified?

We all hope for a "better" year!


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## Fissy (Sep 20, 2011)

Andros said:


> Thanks for the info. Much easier to stick to one thread for those of us that need that important info!
> 
> Well, you know already what thought process I have contributed. Cancer should be ruled out due to those outrageously high antibodies.
> 
> ...


My diagnosis was based off the presence of antibodies and the appearance of my thyroid in the ultrasound. The radiology report stated that it was grossly heterogeneous and that the appearance was consistent with chronic thyroiditis but reported no nodules if offers any clues. Should I ask for an FNA? I haven't asked for one because I thought you had to have nodules to have one but if there is a risk of cancer then I will want one for sure!
Thank you for your help!


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## Andros (Aug 26, 2009)

Fissy said:


> My diagnosis was based off the presence of antibodies and the appearance of my thyroid in the ultrasound. The radiology report stated that it was grossly heterogeneous and that the appearance was consistent with chronic thyroiditis but reported no nodules if offers any clues. Should I ask for an FNA? I haven't asked for one because I thought you had to have nodules to have one but if there is a risk of cancer then I will want one for sure!
> Thank you for your help!


No nodules,no FNA. But I think RAIU would be a very good idea as ultra-sounds have their limitations. The "skill" of the technician is very very important.

The Hashimoto's thyroid is usually very nodular w/a grape-like appearance.


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## lainey (Aug 26, 2010)

Not to disagree too much with Andros, who always gives good advice--but you should keep in mind, to ask for a radioactive uptake scan, you have to be off of thyroid meds for 6-8 weeks to do so.

From the standpoint of cancer, it is very highly unlikely that you would have any without nodules being present. From a diagnostic stand point, right now a RAIU scan is more trouble that it's worth, in the sense that it will likely not reveal much more if there were no nodules on the ultrasound.


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## Koof (Nov 9, 2011)

Not to get off-topic, but what can you find out from a RAIU?


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## lainey (Aug 26, 2010)

Generally, it is used as a diagnostic tool to tell how the thyroid is functioning. In this test, the patient takes a tracer dose of radioactive iodine, and imaging of the thyroid is done. The thyroid uses iodine to make T4, so the radioactive iodine goes directly to the thyroid. If the thyroid is over producing, if you flood the body with iodine, it will take up a high percentage. If the thyroid is under producing, it will take up a small percentage of the available iodine.

Because the patient takes a radioactive tracer of the iodine, it is also possible to do different types of imaging. Areas of the thyroid that do not take up iodine at the same rate (nodules, cysts) may be shown more clearly than in a sonogram. Additionally, if the patient has any nodules it will show if they are cold (not producing thyroid hormone) or hot (producing thyroid hormone).

Before the test, the patient should stop taking thyroid medications for 6-8 weeks, as they interfere with up take. Patients should also cease any vitamins or supplements containing iodine, as these can alter the results.

This test is most often used to diagnose a thyroid function problem--hyper, hypo or thyroiditis, or to further investigate nodules if the patient has any.

For the OP, a sonogram was done showing no nodules, and her diagnosis has been made through blood work. Lacking nodules, a RAIU is likely superfluous at this point.


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## Andros (Aug 26, 2009)

Koof said:


> Not to get off-topic, but what can you find out from a RAIU?


It's not off-topic to me! LOL!!

Here is info.

http://www.radiologyinfo.org/en/info.cfm?pg=thyroiduptake

Ultra-sound limitations http://www.radiologyinfo.org/en/info.cfm?pg=us-thyroid


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## Koof (Nov 9, 2011)

Thanks for the clarification


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## Fissy (Sep 20, 2011)

Thanks Andros and lainey. I'm glad that I probably don't need a RAIU then because I don't think I could cope with going off my thyroid meds at this point in time. I'll bring it up with my endo next time I see him though just to see what he thinks about cancer risk.

Hrmm.. I don't know if my thyroid looks like grapes, LOL. The endo called it scarred, a bit shriveled and very ugly though. I feel kind of bad for it!

My hypothyroidy symptoms have decided to pop back up now though! My hair is falling out again and my BP is 80/60 even though I've been salt loading and drinking so much water that I spend more time in the bathroom than out of it! Wide awake at 2 AM though.. although it being 42°C most of the day will do that I guess, lol.

Umm.. does anyone elses hypothyroidism affect their blood pressure?


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## Andros (Aug 26, 2009)

Fissy said:


> Thanks Andros and lainey. I'm glad that I probably don't need a RAIU then because I don't think I could cope with going off my thyroid meds at this point in time. I'll bring it up with my endo next time I see him though just to see what he thinks about cancer risk.
> 
> Hrmm.. I don't know if my thyroid looks like grapes, LOL. The endo called it scarred, a bit shriveled and very ugly though. I feel kind of bad for it!
> 
> ...


You can always be put on Cytomel (T3) and go off about 10 days prior to the RAIU. It would not be as bad as you think.

If your thyroid numbers are out of whack; BP is affected, Glucose is affected and Cholesterol as well.

Also, iron and vitamin D are depleted and a whole bunch of other stuff that we don't even know about, I am sure.


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