Author Topic: TSH in the Toilet - Anyone else have this problem?  (Read 832 times)

SjoGirl

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TSH in the Toilet - Anyone else have this problem?
« on: February 28, 2018, 04:16:00 PM »
Well, I've been aching for weeks, months really with my muscles getting so tight it's been unbearable, leading me to finally start taking muscle relaxers this week to handle the pain.

After several emails my rheumy finally agreed to run additional blood work, turns out my TSH is in the tank. I don't know if he ran T4 or T3, the blood work was just done today, those results may still be to come. All I know is that I'm thrilled to know that I'm not nuts, low TSH can lead to muscle pain.

Anyone else have this problem? What should I be asking about other than whether this is a thyroid issue (hypothyroidism) or a pituitary gland issue (maybe the case depending on T4 reading)?
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ohiolady

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #1 on: February 28, 2018, 04:24:30 PM »
Yes, terrible muscle and joint pain.  I have to keep my TSH around 1 to feel good.

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Carolina

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #2 on: February 28, 2018, 06:11:22 PM »
My last TSH reading was in 2015, and was 2.09.   Should I ask to have to checked again?   It was 2.65 in 2010 and 3.37 in 2012.

I have never had a problem with my thyroid, so I haven't thought much about my TSH.

But I always like to learn new stuff.

I hope you have a solution to low TSH, SjoGirl.

Hugs,  Elaine
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Scottietottie

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #3 on: March 01, 2018, 01:03:52 PM »
Hi  :)

If your TSH is really LOW - it would suggest hyperthyroidism - not hypo.

I believe in the US the 'normal' level for TSH is between 0.3 and 3.   In the UK it's 0.4 - 4.

I have Hashimotos's thyroiditis and take medication for HYPOthyroidism.   However - I feel ill if my TSH rises above 2 and I feel most energised when it is about 0.1.  (I quite like running hyper - but I realise it's better not to)

I've had TSH as low as 0.003 (but then I had palpitations and I've had it as high as 42 and felt like death. One GP said it was OK when it was 6 - but I felt as ill as when it was 42 so I asked for a referral to the endocrinologist again and she said to keep it under 2.

I need thyroid tests every 6 months (used to be 3) because my numbers seem to swing around pretty wildly.

I'd certainly  ask for exact numbers if I were you.

Take care - Scottie  :)
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SjoGirl

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #4 on: March 01, 2018, 04:33:35 PM »
Hi all, Thanks for your comments. I do have exact numbers, I am sure TSH is low, below .4.

Today my PCP also checked my T4, which was normal, so she is saying I have subclinical hyperthyroidism. She said we just keep an eye on it for now and periodically test (ah more regular blood work). My sister has Graves disease so I will definitely be sure to keep an eye on this.

My sodium is also very low, just two clicks from the danger zone. I now have to watch how much I drink and be sure to eat salt.

For those keeping your readings at a certain level how do you accomplish that, medication, diet, etc? My PcP says that foods won't help.
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irish

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #5 on: March 02, 2018, 12:02:58 AM »
With the TSH when the number is low as below the .03 etc we are hyperthyroid. When the TSH is high as in above 4 we are hypothyroid. I would like to shoot the person that set up that system cause it makes for poor understanding and communication. When my TSH is above 5 I feel ill and when it is above 9 I fell like I am going to die. Weak arthritis in all my joints and muscle pain. Irish

Linda196

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #6 on: March 02, 2018, 03:02:09 AM »
Nearly 50 years ago I had a subtotal thyroidectomy for what turned out to be Hashimoto's thyroiditis, not the Cancer they thought.

As a result, I've been on thyroid medication for a very long time, and well maintained, through 3 pregnancies and memopause with minimal adjustments to dose.

Last fall my TSH was 0.01...I felt the way I always feel, and my Tf and fT4 were within normal range. My doctor just scratched his head and we opted to recheck in 6 weeks to rule out aberrant results or lab error. Six weeks later it was the same so my dose was cut in half. Three months later it was "way up" 0.09! Dosage was cut in half again and I'm now waiting for the three month labs to see whats happening. I've always been in a 0.5 to 2.0 range.

If it remains low on 25% of my 50 year stable dosing, I'm off to the endo again. My wonderful new doc has done all the right things, asked all the right questions and made all the right suggestions, letting me know that he is aware of the weird concerns of AI thyroiditis, including the very unlikely but real possibility that, after 50 years, and with only 1/8 of a thyroid, I've made the Hashi swing from hypo to hyper!

The whole time, those symptoms that I relate to thyroid have remained fairly stable, although I have had a few long flares of various rheumatological symptoms which I could be misinterpreting; that old "which process is to blame this time" problem. Most annoying is the fact that I had been losing weight, until last fall when, with no dietary changes, my weight started to creep up again, and for the first time in my life, I'm becoming more sensitive to cold than heat. doc thinks I'm "complex" (doc speak for weird) but I bet you understand!
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Maria3667

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #7 on: March 02, 2018, 01:27:41 PM »
Hi Sjogirl,

I feel that way when the dose of my thyroid meds is too high. Muscles tend to become tighter. So I have to be extra careful with T4 (levothyroxine). 

But you also mention salt. When the electrolyte balance is off, it can also cause sore muscles. I balance mine carefully with calcium, magnesium and potassium.

I also find supplementing with Green tea extract (capsule), takes care of the pain.

Good luck!
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SjoGirl

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #8 on: March 03, 2018, 12:46:51 PM »
Linda. Thank you. Yes I can relate to  "doc thinks I'm "complex" (doc speak for weird)". I just tell my docs that I was the runt of the litter (it's true, I am the youngest, my parents were much older when I was born, and I am the smallest of all).

My free T4 reading was fine so my doc is just going to watch TSH. I am starting back on Gabapentin, all docs (PCP, rheum, and neurologist) agree that's the way to go for the pain.

Maria I am also now counting fluid intake and focusing on right balance with salt intake. In fact I plan to soak in some Epsom salts this afternoon. I'm hopeful these steps will help.

Thanks all, this group is a HUGE help.
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Linda196

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #9 on: April 16, 2018, 04:15:59 AM »
Thought I'd resurrect this old thread for an update on the three month labs I was waiting on.

Good news is, I haven't made a swing to hyper.... Bad news is this TSH was 47! Not 0.47 or 4.7, forty-seven. Doc just said OUCH, and got on the phone to an endo LOL. Suggestion was double the dose for another 3 months and see if it starts to regulate, check all other hormone levels now to see if there's an extra-thyroid influence, and if things still aren't clear at the 3 month bloods, it's time to start looking at the form of replacement to see, if after 50 years, I need something else. Endo already gave me an appointment for then which I can cancel if not needed. I think his biggest concern is not the value itself, but rather why after all this time of stability, it's acting out at all.

Weirdest thing is, all other thyroid labs are normal, no obvious thyroid symptoms: minimal weight gain, slight hair loss, and slightly decreased tolerance to cold, which in Canada this winter means I am still wearing a sweater when I go outside in April! GP brought up an interesting concern that hadn't occurred to me. I've had a lot of problem with increased shoulder and hip pain which I figured was pre-existing polymyalgia rheumatica. While he agreed that was a strong possibility, he also thinks this thyroid fluctuation could cause a change in pain perception and tolerance, so hopefully as it becomes controlled, the pain will lessen, or at least my perception of it will change.
« Last Edit: April 16, 2018, 04:18:05 AM by Linda196 »
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irish

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #10 on: April 16, 2018, 05:51:16 PM »
I had so much pain in hips and hands about 8 years ago and thought it was my autoimmune. I asked my neurologist for a script for a walker as I thought this was coming soon. Just by chance it was time for my thyroid blood work. My TSH was 14.8 so I had the increase in med and within 3 weeks my pain was almost gone. That was the first time I was able to relate to high TSH and joint-body pain. It was a lesson I did not forget.

I have been able to keyboard more the past few days as I have been pretty lazy and not using my hands as much at my sons house. Good luck to all. Irish

P.S. Linda----Is there any other hormonal influence that can kick up the TSH like that?

Linda196

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #11 on: April 17, 2018, 03:42:43 AM »
Irish, since the TSH is a pituitary hormone, I think he's looking at some sort of pituitary dysregulation , not necessarily a problem with the thyroid at all.

He's a new doctor for me, my original GP of nearly 50 years retired last year, and this one doesn't really know my background as far as work and research, so he's doing the "explanation for lay people" route, which he does very well, and I haven't found anything to question so I let it go at that. I think the revelation will come if and when he consults any of the specialists, since i worked with most of them quite closely over the years and they will "give me away" so to speak. I think it's a nurse thing, we don't like to volunteer our status partly for fear of coming across as a "know it all" and partly for fear of the "well you're a nurse you don't need extra help or teaching", both of which reactions I've run into in the past.
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eija

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #12 on: April 17, 2018, 06:28:14 PM »
I don't know how it is in the US/Canada/UK but at least in Finland there's a lot seriously wrong in the knowledge and treatment of thyroid issues. One of them is looking at TSH as the most important sign of thyroid issues - it's not. In the link there are several statements Finnish endochrinologists use as kind of "favourite reasons" to not treat the patients or treat them wrong/inadequately. In the document these statements have been corrected by one of the best endos in Europe. I think there's loads of good information in that set of answers.

" the same TSH level can mean vastly different things to different persons (Hoermann et al. 2017). The TSH value cannot be interpreted in isolation (Hoermann et al. 2016, 2017)."


"[/size]An oversimplified TSH interpretation is unjustified by thyroid physiology (Hoermann et al. 2010). It is therefore only helpful as a screening test but not as a reliable diagnostic test.[/color]"

Also, the ranges should be read differently for people without thyroid illness (that is, without treatment) than for those who are treated with meds. For example, my TSH has been unreadable for years now, but that does not mean I'm hyper. My TSH just drops stupidly down if my FT4 is raised (by synthetic thyroid hormones) high enough for me to feel even human.

[/size]http://kilpirauhaspotilaat.fi/artikkeli/professor-hoermann-responded-to-statements-from-finnish-endocrinologist
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SjoGirl

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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #13 on: April 18, 2018, 05:08:31 PM »
eija, thank you very helpful!
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Re: TSH in the Toilet - Anyone else have this problem?
« Reply #14 on: April 18, 2018, 06:43:34 PM »
Take a look at the Boo and webpage for Stop the Thyroid Madness

https://stopthethyroidmadness.com/lab-values/

A lot of older doctors are using Thyroid tests that are no longer the correct way for diagnosing or treating thyroid issues, I ran into this personally with an older PCP that was luckily fixed by a younger Endocrinologist.  Definitely find a good endo to try out as it makes  world of difference in how you feel between regulating moods and metabolism (energy).

Hope this helps, got me started in the right direction.  Book is worth reading too if you have any thyroid issues.

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