Hyperthyroid??

[Sundancer]

hmm...thinking about it more...this is sorta funny
https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284

symptoms Hypothyroid

• Fatigue YES
• Increased sensitivity to cold YES
• Constipation YES
• Dry skin YES
• Weight gain NO
• Puffy face NO
• Hoarseness YES
• Muscle weakness YES
• Elevated blood cholesterol level a bit
• Muscle aches, tenderness and stiffness YES
• Pain, stiffness or swelling in your joints YES
• Heavier than normal or irregular menstrual periods not relevant
• thinning hair YES
• slowed heart rate NO
• Depression NO
• Impaired memory YES

o well, so much for lists of symptoms

 

[Wonkmonk]

Viral infiltration???

I'm not aware of viruses to be honest, but at the same time I've never been checked on it and do not know any doctor who would do that for me.
Maybe there is a herpesvirus wandering around in my body.

I had thyroidectomy in 2014 because of autonomous tissue and in 2017 was diagnosed with probably herpes virus-caused CFS after deteriorating gradually over the past 10 years. I strongly suspect the herpes virus played a role in my thyroid disease as well.

Thyroid disease of various kinds is common in CFS patients. Human Herpes Virus 4 (Epstein-Barr Virus) is suspected of playing a role in the development thyroid autoimmune disease.

 

[pamojja]

, it would in my view be appropriate to do ultrasound and scintigraphy.

With the ultrasound, they can determine if your thyroid gland is enlarged or not, if it is homogeneous (inhomogeneous would be a sign of disease), and if there are nodules in the thyroid gland.

Am of the opinion too, the first non-invasive and easiest step to rule out serious things would be ultra-sound.

In my case with normal TSH, fT4 and below normal fT3 an slightly enlarged homogenous thyroid was found (which I regularly monitor with additional ultrasounds), without any nodules.

In my country they would right away do a scintography with radioactive iodide. Since I take high-dose iodine that wouldn't have worked anyway..

 

[pattismith]

I think if your Heart rate at rest is 80, you could monitor it, because if it still increases, it could mean you are going hyper

 

[Iritu1021]

It sounds like you have both hypothyroid and hyperthyroid symptoms. You should get fT3 level checked and plug the values into SPINA calculator. Even then it only gives you an idea about what is going on in your heart, that doesn't mean at all that the same thing is happening in your tissues, especially in the brain which has very different thyroid regulation than peripheral organs.

Today I've given a shot at tying together my various dysautonomic thyroid states under my T3/ T1AM imbalance hypothesis (which pattismith and I have discussed in a recent thread on 3-iodothyronamine).

Thyroid Inferno: The Eight Circles of Hell
http://www.chronicfatiguediagnosis.com/2018/03/20/thyroid-inferno-the-eight-circles-of-hell/

I've arrived at this table because I experimented with different forms and combinations of T4/T3, various neurotransmitters that effect TRH secretion, iodine and lithium which affect TSH and deiodinases. Nevertheless, the states are very approximated and I would take it all with a grain of salt. My main purpose for this table is to show that thyroid metabolism is, in fact, much more complicated that it is made out to be by conventional medicine. I'm just trying to make sense of it all...

 

[Sundancer]

thanks all, I do not think I will have a scintography ( or an operation if that would be the case) That would bring me back to very severe and I've decided some years ago that i will not take that risk. Seeing that My measured levels are still borderline normal I do not want to get worried yet .
I'm very oversensitive to any kind of regular medicine ( MCS) Even over the counter things as paracetamol make me much worse. So I will not take them.

for now I have decided not to up the dose of B12 yet ( because that can kick the thyroid) and maybe start with carnitiine a little earlier then I had originally planned.

I think if your Heart rate at rest is 80, you could monitor it, because if it still increases, it could mean you are going hyper

Thanks @pattismith , that's good and simple advice. I usually do that twice a week before I go up to bed. Lately I find that climbing the stairs has less impact on heartrate then it used to, hope that keeps up.

It sounds like you have both hypothyroid and hyperthyroid symptoms. You should get fT3 level checked and plug the values into SPINA calculator. Even then it only gives you an idea about what is going on in your heart, that doesn't mean at all that the same thing is happening in your tissues, especially in the brain which has very different thyroid regulation than peripheral organs.

Thanks @Iritu1021 , that was my original intuition, some conversion problem so that my body does not convert fT4 in fT3 ( or a step earlier, I do not yet know much about the thyroid) adequately.

I don't think GP will order this though, so I've looked at what I can do by myself.
I found several options over here: https://bloedwaardentest.nl/schildklier/
( yes I know you cannot read it, but I can)

TSH, fT3 + fT4 = 59 euro
T3 only = 25 euro
fT4 + T3 = 39 euro
fT3 only = 22 euro
rT3 = 79 euro

what is useful? FT3? or T3? or both. I've no idea where to start to be honest. And even though I cannot be sure, I'm pretty sure GP will say just to wait. If anything with the T3 business is out of whack testresults may help in whatever way.

At the moment I do not have the possibility to really study it. First that bankloan, that costs me most of my cognitive ability, Thursday the lady of the bank comes here. After that there are more things in the administration corner that require my attention.

oh, and an addendum, I may start taking my temp in the morning. When some years ago my health was going south fats ( about half a year before I crashed into bedbound) I did that, and remember it was too low.

 

[Iritu1021]

@Sundancer, I gave up on arguing with doctors long time ago - it was bad for my stress levels - and now I pay for all my thyroid testing myself.

You should get TSH, fT3 and fT4 for 59 euro. It's important to do them all at the same time since your picture might have already changed since the last time. If you can afford it, consider getting rT3 as well but it's not really necessary for SPINA.

Whenever your blood work is ready, one of us can help you run it through the SPINA calculator.

I agree that it's a good idea to regularly check body temperature, blood pressure and pulse( both laying and standing).

 

[Wonkmonk]

thanks all, I do not think I will have a scintography ( or an operation if that would be the case) That would bring me back to very severe and I've decided some years ago that i will not take that risk. Seeing that My measured levels are still borderline normal I do not want to get worried yet .

No need to get worried so far, but to observe the thyroid in the coming months is important.

 

[Sundancer]

If you can afford it, consider getting rT3 as well but it's not really necessary for SPINA.

Now that I have a loan on the bank money is less tight, what does reverse T3 say, must it be done together with the other thingies? Or could I first do the first 3, and then see what comes ut of it?

Mean, when useful I do it but when ( as of now) questionable worth I'll wait.

plus I suppose when I go this way, It' be useful to repeat this bloodwork.
( hmm, when T3 is off my GP may be more willing)

 

[Iritu1021]

Now that I have a loan on the bank money is less tight, what does reverse T3 say, must it be done together with the other thingies? Or could I first do the first 3, and then see what comes ut of it?

Mean, when useful I do it but when ( as of now) questionable worth I'll wait.

plus I suppose when I go this way, It' be useful to repeat this bloodwork.
( hmm, when T3 is off my GP may be more willing)

rT3 looks at whether your body is inactivating T3 into less active form but I think it can wait and be your next step if necessary. For now we are still trying to decide if your main problem is too much or not enough T3.

 

[Sundancer]

You should get TSH, fT3 and fT4

thank you @Iritu1021 , for now I'll just do as you say. Later on I'll study on thyroid and how it works.

I now see the combination test is TSH + fT4 + T3. But I gather you say I need to test free T3, that can be done too, then I have to order two different tests, one for THS only, and one for the free T3 and freeT4.

 

[Iritu1021]

They don't have a different panel on there that has both fT3 and fT4?
If not, then yes, just buy two separate tests and have them drawn at the same time.

 

[Shoshana]

@Sundancer

I was only able to read some of the posts on this thread, but I wanted to tell you,
in case it is helpful for you to be aware,

that if you take B vitamins or a B-complex, or multi-vitamin, they likely have Biotin in them,
so they should not be taken, before you have a thyroid test.

I just started a thread with more detail on this topic, in the section for Members Discussion CFS/ME.

 

[Sundancer]

Ha, thanks @Shoshana , both for your info and for finding back this thread for me...

I had my next blood-draw done and seems like thyroid has not changed ( marginally changed the good way) since last time, which I regard as good news. After that draw I started taking carnitine, which may be of help to slow down things.

even though insurance rules that GP is not allowed to order fT3 , he has done it for me, by calling a guy of the lab he knows. He judged my question to test it good , reasonable, useful. Something like that. It's right smack in the middle of testing reference.

as insurance seeks to make healthcare cheaper, I really wonder how a visit to an endocrinologist may be cheaper then my GP ordering this test..... They have a sort of upside-down thinking I do not get.
But GP knows that I would not visit a specialist whatever, and would order this test privately on my own cost ( well...I pay for this one too....)

TSH reference : 0.3- 4.2
fT4 teference : 12-22
fT3 reference : 3.9-6.8

draw January :
TSH = 0.46
fT4 = 24
fT3 not tested

draw end may:
TSH = 0.59
fT4 = 23
fT3 = 5.2

next testing will be in September, I'll stop the biotin beforehand and see what happens
( ahh...I feel i know, thyroid will be too slow then )

 

[pattismith]

Ha, thanks @Shoshana , both for your info and for finding back this thread for me...

I had my next blood-draw done and seems like thyroid has not changed ( marginally changed the good way) since last time, which I regard as good news. After that draw I started taking carnitine, which may be of help to slow down things.

Good idea, if I was hyper, I would also take flavonoids (I stopped both carnitine and flavonoids since my fT3 is low)

 

[Sundancer]

Good idea, if I was hyper, I would also take flavonoids

I do take them in liberal amounts, this one, a nice combination.
https://nl.iherb.com/pr/NutriBiotic...avonoids-Crystalline-Powder-16-oz-454-g/23509

I just gave it a try, like what is difference in vit C with and without flavonoids, I think the flavo's help with histamine issues. I do better with them anyway.

looking back in my orderlist, I see that i started this vit C end januari.

so, if I understand you well this is helpful in slowing down thyroid too?

It's strange really, most I read is that people have a too slow thyroid, my mum had too fast thyroid though, she got operated on that in the fifties. I do not have enlarged thyroid though, I think she had, but not sure.