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Old 04-17-2017, 04:33 PM   #1
jem51
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New thyroid dx

Well, I never thought I'd have thyroid issues and I am first in my family....ever.

My TSH was 0.9 5 years ago and has been slowly changing but this past October it was 2.48.
I had moved and started seeing a doctor rather than NP since she had openings. She only tested for TSH and I really didn't think about it since I had no symptoms.

On surgery day for my hyst the surgeon brought it up and said to keep an eye on it and watch for symptoms....that was March 3.
I decided to just wait.

Around the beginning of April, I noticed that my thyroid was swelling. I had also started to experience extreme cold....very uncomfortably cold.
I decided to wait for my final post op follow up rather than go back to the doc who ordered the initial test AND I am so glad for that decision.

I asked the Gyn if my surgery could've had an effect on thyroid when already post meno.
He gave some good explanations and talked about meds then ordered Synthroid 25 with a panel to be drawn every thirty days until stable.

He does not ever order generics and sets up Canadian pharmacy order when the dose is set.
He has all his pts order hormones in this manner.

I will be seeing the NP in his office. It's all under the same umbrella as the PCP so not a loss to that doc.

So here I go. My first prescription med...hope it's the last.
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Old 04-18-2017, 05:00 AM   #2
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Thyroid issues in women tend to develop with times of hormonal shifts--puberty, childbirth, menopause. It's likely yours developed with menopause, but the changes are so very slow, it often doesn't manifest with labs or symptoms until years later.

I was clearly hypothyroid for over 5 years before I finally got a diagnosis.

My 24-year-old niece probably developed hypo with puberty, but in adolescence mild depression and mood swings are usually considered 'normal.' So it was a routine physical with a new primary when she was 21 that her TSH was discovered to be over 12, and she was diagnosed and treated.

My endo doesn't like generics either because with hormones, being able to be sure of the dosage is critical. My insurance insisted on generics, and when I tried them, I was a mess, so he wrote to the insurance company to get me a waiver so that I could stay on brand.

By the way, at age 75, my thyroid Rx are the only ones I take--but be consoled; it's not considered a 'medication.' They are supplemental hormones. My primary made this distinction for me when he commented how great it was that at my age, I take NO Rx meds.

Last edited by Leo41; 04-18-2017 at 05:02 AM..
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Old 04-18-2017, 09:01 AM   #3
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Thanks Leo.

I went to Safeway to pick up the script and they said Tricare didn't want to pay for anything but generic.
They used some kind of coupon discount and it cost $39.16.
I should've asked what the price would be without the discount because I will switch to Costco if it's too high.

They are sending the doctor some form and that will go to Tricare then we'll see if they pay. They are so good about covering......

You're right about the symptoms developing gradually and the numbers as well.
I have felt really good for the past couple years and that is why I didn't really thoroughly review my own labs.

My medication list consists of B12 and D3. It is expected that we will just need meds as we age. Crazy!
I'm really okay with this and am happy that I didn't feel like I was dying before it was caught. I probably wouldn't have gotten out of bed if my TSH was 12.
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Old 04-18-2017, 12:30 PM   #4
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Were you tested for B12 and D3?

I don't take any supplement without first checking if I have a deficiency.

I take D3 because mine was very low when tested, and I find I have to continue to supplement to keep it in the normal range (my endo checks it with my thyroid periodically). But my B12 was way high (my endo says that's fine--that it can never be too high).
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Old 04-18-2017, 01:32 PM   #5
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My D3 was 39 when last checked and that's taking 2k daily.

I can't remember the last B12 but it was borderline and since I don't eat meat, NP suggested supplement.
I only take a sublingual once weekly....probably won't recheck until fall.
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Old 04-18-2017, 05:27 PM   #6
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When my D3 was tested (about 5 years ago), it was 37. I started taking 4k, but six month later, there was only the slightest improvement, so I went to 8k--and it took a year at 8K to get my level to about 63. I have been maintaining at that level with 2k in summer and 4k in winter.

I hope you have my experience. I thought I felt fine (before the D3 labs), and when I got it into the 50s, I couldn't believe how much better I felt--just generally 'well' and with more energy (not a lot, but more:-)
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Old 04-18-2017, 08:18 PM   #7
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My levels are better in summer so taking more in winter makes sense.

The first time it was tested in 2008 it was about 20. I started taking 1k daily and it went up to near 60 pretty quickly but it dropped again and the next year is when I went to 2k.

If my labs are in July it's great. In October it is starting to drop a bit.
This is the lowest it seems to get.

I'll have to give that some thought.

What about iodine....I have taken 3 drops daily but now that I'm going to be taking Synthroid, I wonder if I should discontinue. Any thoughts?

Oh, here's something I'm wondering about: Around the same time my thyroid started enlarging, etc, I started having cramps in my feet and toes. It's pretty much every night and it's hard to control with the mg and k I used when LC.
I eat more foods rich in minerals now so I just wonder if it's all related. I can't seem to find anything when I search other than mg and K.....
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Old 04-19-2017, 03:55 AM   #8
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I would drop the iodine because it's BAD if you have Hashimoto's, and you may not know that (7 of 10 hypo in the US are Hashi's) because the blood test is notoriously false negative.

I was tested over 5 years and never showed the level of antibodies that would indicate Hashi's, but when I had a biopsy of one of my thyroid nodules, the pathologist's report diagnosed Hashi's from the tissue he'd extracted. My endo told me that he was pleased to see that because he thought I had Hashi's but couldn't make a diagnosis from the blood tests.

It's possible that the 'cramps' you're experiencing are related to the thyroid issues (and will be resolved when your hormone level is optimal via Rx).

When I went undiagnosed for over 5 years (stupidly listening to my clueless primary), I had two carpal tunnel surgeries. I later saw that carpal tunnel is one of the symptoms of hypothyroidism, and I asked my endo about it. He said that when the thyroid slows, all the tendons in the body swell, and the only place that can't accommodate that swelling is the wrist. So it's possible that's what's happening with your feet and toes. But I'm no physician and won't diagnose
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Old 04-19-2017, 01:18 PM   #9
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Whoa, that explains a lot and now I'm sorry I was so lax about my numbers changing.

I have had tendons in my hand thickening and thought it was just from damage during years of renovating old houses. The thing is that it is mostly my left hand and I have done way more damage to the right.

Around the time I saw my TSH go over 2, I 'pulled a muscle' in my upper arm. It got worse and effected other tendons in the same area.
I went through 12 PT sessions and it got worse. Now it seems stable but will never be the same....I don't think.
Here's the thing; I am starting to have the same symptoms in the other arm without an injury. It seems crazy or at least it did until I read your response.

Well now I am just anxious for my thyroid to stabilize. I have taken 2 doses of 25 mcg and I'm already looking in the mirror to check the swelling in my neck.
I am aware that 25 is probably not going to do the trick but I'm in a hurry before my body totally falls apart.

Oh the doctor's office just called and said Tricare wants me to fail on generic before they'll pay for Synthroid.
I told them I'd just pay for it and figure it all out when the needed dose is figured out. Now I just have to pharmacy shop.
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Old 04-19-2017, 01:50 PM   #10
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Your doctor probably told you that T4 (Synthroid) takes 6-8 weeks to fully take effect in the body, so don't look for immediate relief of any symptoms.

Also, it's important to start low, and 25 mcg is a standard introductory dose, but it's possible you'll need a higher dose as soon as that is established in your body.

For example, by the time I was diagnosed, I had such severe symptoms that my endo knew I needed 75 mcg, but she knew she had to start me lower, so she tried 50 mcg. The next day, I called her from work because I was having heart palpitations and general 'edginess.' She dropped me back to 25 mcg--which I tolerated fine, and raised me slowly to 75 mcg over the course of a year!

That's how powerful these hormones can be.

And my insurance is probably the same about wanting 'failure.' I had to 'fail' on generic T3 before they let me have brand--even though I pay more than triple for the brand.
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Old 04-25-2017, 09:55 AM   #11
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So only eight days later and I might be feeling a teensy bit better. Last week I was so, so cold and tired.
I think that has improved a bit....at least enough so I'm not under a down comforter napping on a 75 degree afternoon.

Script is going to Costco for now.
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Old 05-13-2017, 04:04 PM   #12
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Jem, you're got a couple more weeks of thyroid hormone in your system, and I'm wondering how you are doing. It takes a while for it to convert as Leo has written, but hopefully a few weeks in you are starting to notice a difference...things you may not even recognize until thinking about how you felt "back then" and how you are feeling now.

Update us, okay?
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Old 05-15-2017, 07:56 AM   #13
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I just had my blood draw on Friday so will see what's up soon.

I'm still not sure there's much of a difference. The foot cramps are still driving me crazy. The tiredness comes and goes and also the coldness.
Thyroid still enlarged.

I'll let you know what the numbers are.
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Old 05-15-2017, 12:20 PM   #14
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My goiter (enlarged thyroid) went down very, very slowly when I was finally taking supplemental hormones.

The alleviation of my fatigue happened quicker--but it was also fairly slow.

Things should improve with time.
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Old 05-15-2017, 04:21 PM   #15
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Oh, that's good to know, Leo.

Yesterdays labs are good; T3=83, T4=8.7, TSH=1.005.

The doctor likes the TSH range 0.5-1-0 so I'm thinking he'll just watch.

The tired and cold is better but, of course, I'd like it to be where it was before immediately.

The 'thickening' tissue in my hands turned out to be Dupuytrens(sp) disease. No official diagnosis yet but I spoke to a woman who has it and she showed me her hands....we match. It is very obvious.

The foot cramps may be less. I'm trying to decide but if there is improvement, it is very recent.
Guess, I'll have to be patient.
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Old 05-17-2017, 09:51 AM   #16
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If it takes 6-8 weeks then I still have some time and maybe 25mcg is all I'll need.

When the foot cramps subside, I will be pretty comfortable.
Since it's very summery weather here, the feeling of cold is not so bad. It'd be nice if it's gone by winter, though.
If I was still working the tiredness would be very inconvenient but retirement allows me to take a break. The worst part of that is not being able to get through a full hike without feeling exhausted.

Oh, well.
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Old 06-16-2017, 11:20 AM   #17
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I have been suffering with unbearable cold intolerance for about 4 years and periodic hair loss as well as periodic fatigue. I also have the most PAINFUL toe and foot spasms. I always assumed that it was related to my spine disease, but perhaps not.

I have been pretty sure my thyroid is not functioning properly since 2014, but my PCP has said my labs are OK.

She has put in the order for all the thyroid labs I requested so I'll have that blood work drawn within the week. I know I may need to see a specialist, since it seems that a lot of PCP miss the boat on this.
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Old 06-16-2017, 01:50 PM   #18
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I wish you luck with that. Maybe with all those labs your PCP will get right on it.

NP's are great for keeping up on thyroid labs and I don't know why doctors not so much.

I have a blood draw on Monday. Doctor ordered same monthly for a year.
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Old 06-20-2017, 11:06 AM   #19
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New lab results 8 weeks; TSH 0.96, T4 6.8, T 3 still pending.

Looks good so far and I'm doing okay. I don't think I can feel cold since the heat wave here is suffocating me.

Foot cramps are less but still have some. Goiter taking it's time.....
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Old 06-21-2017, 03:24 PM   #20
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Saw the NP today and she is thinking I may need more meds but is waiting to see what next months lab shows.
The T4 is less which is an indication that there is some issue. T3 stayed the same.

She also ordered US because my thyroid is enlarged, more on the right than the left. She called it generous. I don't know how long it will take to get that done but I know I need it. I'm losing my voice and I feel that pressure.

Honestly, it's making me a little nervous.
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Old 06-22-2017, 04:52 AM   #21
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Saw the NP today and she is thinking I may need more meds but is waiting to see what next months lab shows.
The T4 is less which is an indication that there is some issue. T3 stayed the same.

She also ordered US because my thyroid is enlarged, more on the right than the left. She called it generous. I don't know how long it will take to get that done but I know I need it. I'm losing my voice and I feel that pressure.

Honestly, it's making me a little nervous.
I hope you can get the US quickly. The 2 systems that I go to are really good about doing those things quickly. I'm skeptical- have worked in health care for near 20 years- they like to bill for all of that stuff, so they make it happen.
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Old 06-22-2017, 12:35 PM   #22
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Thanks, Carly. Nothing seems to happen quickly. Somehow getting the go ahead from insurance seems to be a big ordeal.

I was doing some poking around the net and discovered that thyroid can effect voice because the nerves run through.
It's really worsened over the past three weeks but now that I think back it's been changing for a while.

What did your lab results show.
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Old 06-23-2017, 06:03 AM   #23
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Thanks, Carly. Nothing seems to happen quickly. Somehow getting the go ahead from insurance seems to be a big ordeal.

I was doing some poking around the net and discovered that thyroid can effect voice because the nerves run through.
It's really worsened over the past three weeks but now that I think back it's been changing for a while.

What did your lab results show.
I had the labs drawn yesterday evening, so the results should be in early next week I think. I see my PCP for my annual physical on 7/3.
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