Some symptoms i have been having a while, trying to figure out what it is

[jay185]

Hi all,

Something is really bothering me right now and its a progressive weakness in my limbs, constant appetite even when i have eaten well and enough. I also feel very cold out of no where even if i have drunk a cup of hot tea or hot dinner.

I am super intolerant to the cold outside. My neck area is also tight, i suspect my thyroid area.
Sometimes it feel like it is burning. However T3,4 and TSH come back normal.

Wondering if anyone here thinks i may need to see a certain specialist for this but in the UK doctors dont seem to care and just say nothing wrong with thyroid, i have not had any scan as of yet.

The tightness of the throat/thyroid area also correlates with palpitations, the tighter it gets the more "pounding" i will feel in the chest.

It is like I have two layers of problems.

The everyday CFS which is weakness and tiredness.

Then i have these strange flare ups where one minute i am ok then next minute i am super cold, weak, stiff, shivering and shaking. My legs and arms are WORST for this, as too my hands and feet.

Any advice going forward?

If you recommend a thyroid doctor which specialist i am best seeing? Rheumatologist, endocrinologist or immunologist? It may be i require some kind of med to help my body, when i feel cold my muscles kind of cramp up

Thanks

 

[Gingergrrl]

However T3,4 and TSH come back normal.

Have you tested for the two Hashimoto's autoantibodies (autoimmune thyroid)? Also, what is your TSH b/c some doctors will tell you it is "normal" when it really is above the range and could benefit from a thyroid med. Is it above a 4 or 5?

 

[jay185]

The last time i had it checked was about 2 month ago, TSH was 0,91 and T3 was 4,9 at that time.

There was something on the test called thryoglobuline AL, not sure what this meant but it was <15.

Symptoms have gotten worse since.

I dont know about auto antibodies.

I am not sure if the thyroglobuline AL result is antibodies.

 

[Gingergrrl]

TSH was 0,91

I wasn't sure with the comma "," if you meant 0.91 but if so, that is a very low TSH and it is definitely NOT hypothyroid. My Endo likes my TSH to ideally be under 2.0 which it usually is with Armour Thyroid (and we never let it get above 3.0).

There was something on the test called thryoglobuline AL, not sure what this meant but it was <15.

The two Hashi's autoantibodies are TPO (Thyroid Peroxidase Antibody) and TgAB (Anti-Thyroglobulin) so it looks like you were tested for at least one of them. I can't tell you if yours was normal without knowing both your number and the reference range (because every lab is different).

 

[jay185]

Thanks for the response and information.

If i have low TSH what could it possibly mean for me? Hyperthyroidism?
I recall getting the lumpy feeling in my throat sometime after being upset about something.

That lumpy feeling can increase and decrease.

TSH Range was 0,27 - 4,20
(i am not sure why the list is in commas rather than bullet points but i believe it is definitely bullets)

FT3 4,3 - 6,7

T-AL was <115

Comparing my last test for TSH compared to one two months before it has definitely gone down in number, the one previous was 1.72, seemingly it has dropped to 0.9 in a short period of time.

The question is who do i see about this before it gets worse, should i perhaps try to buy thyroid meds online and see if it makes a difference?

I have been reading about some problem regarding reverse T3, i wonder if perhaps this may be my problem all along because it is a hidden blood test that they often miss or refuse to test for?]

Thanks again

 

[MTpockets]

sounds like adrenaline possibly.

 

[pattismith]

if your TSH and fT3 tends to decrease, you may benefit from iodine + selenium + B6 supplementation like I did.

I had the same symptomatology as you did (+ widespread pains, cognitive dysfunction, memory loss...), and my fT3 and TSH were in the low ranges (my rT3 was higher than normal)

But the treatment that finally reversed my condition is testosterone skin gel.(I am a 51 old lady in perimenopausal but my illness runs for 35 years)

 

[Gingergrrl]

Thanks for the response and information.

Just curious, have you been tested for the Graves Disease autoantibody (TSI)?

 

[jay185]

@MTpockets I do have adrenaline problems, adrenal supplements dont work for me since i got this problem.

@pattismith . interesting, do you consider 4,9 to be low for T3? I do have testosterone problems i must admit, my testosterone level is quite low. Do you suggest any particular testosterone brand? I am willing to try it. Whatever this problem appears to be both progressive but also fluctuates then disappears.

It is like one minute i have muscle pain, the next minute i dont, one moment i am feeling cold, the next minute i am not, one moment i have palpitations one moment then next moment i dont, its like a wave/cycle of problems that come and go, the feeling cold and muscle problems are the worst symptoms.

@Gingergrrl I have not been tested for Graves disease. I am sure something is wrong with my thyroid though because it just tightens up out of no where then releases, rinse and repeat. I also consider some infection is affecting the thyroid, possibly.

Thanks all

 

[jay185]

Oh another issue i forgot to add, the areas under and around my eyes have turned blue with a yellow tinge. I suspect this is also part of the same problem.

 

[valentinelynx]

I may be totally off with this, but perhaps should suggest it... I'm wondering if the actual source of your problem is cardiac. That is, maybe your palpitations are the most important sign. If you are having significant arrythmias, this could cause symptoms from poor cardiac output (your heart not pumping enough blood). This is not always associated with the obvious chest pain. Neck or jaw "discomfort" is a common symptom: it feels like a tightness in the neck or jaw. If your cardiac output is low, you could also feel cold in your arms and legs due to poor blood flow. And, of course, episodes of low cardiac output due to arrythmias would make you feel weak and fatigued.

It might be worth bringing up with your doctor. It's always a good idea to rule out a serious heart problem even if you think the probability is low. An EKG might show an arrythmia, but only if it happens while the EKG is being done. Testing for intermittent abnormal heart rhythms is usually done with a "Holter monitor" where you wear 3 electrodes and a recording device for a period of time (usually 24 hours).

I hope it's not a heart issue. But if it is, the good news is that medicine is pretty good at fixing heart problems, unlike a lot of other things we suffer from!

P.S. The use of commas instead of periods in decimals (e.g. "4,9") is a European thing...

 

[jay185]

@valentinelynx Hi there, its funny you mention this because the last doctor i saw actually wanted to know why i ended up in hospital with high systolic blood pressure about 4 months ago, note this has not happened since i cut out certain foods in my diet. Its possible the resulting palpitations was something separate, perhaps POTS related, bad diet = increase in POTs (perhaps?).

I was put on a holter monitor and even had an ECG and echo cardiogram (Ultra scan of heart) within the last month, all came back fine. The only thing the cardio doctor said was my BP was lower ranged than average upon rising but otherwise he said i am fine and did not need to see me again.

I think there is a clue here though, my muscles in my legs will become weaker suddenly then return to normal later, my back muscles will also warm up and have this feeling of burning then go back to normal, its weird. This same warm burning feeling is something i feel in the thyroid as well.

At one point i considered MS, but my white blood cells are fine so i cant have it.

Thanks

 

[Moof]

I think @valentinelynx may be onto something with this – though the cause could still be down to abnormal thyroid activity. Several people in my family have had had to have pacemakers in old age, because even with treatment their thyroid hormones were making their hearts run too slow. This can cause symptoms of low cardiac output, even when there's nothing actually wrong with the heart itself.

Low blood pressure can also complicate the picture, as can physical inactivity. I wear compression stockings, which I find really helpful with my low blood pressure.

It might be worth monitoring your heart rate (pulse oximeters are pretty cheap) and blood pressure (if you don't have a good quality monitor, might you be able to borrow one?) several times a day for a week. It's difficult for a GP to get this detailed a picture, and it might provide some clues that will at least prompt them to do an ECG. My heart rate goes down into the 40s sometimes, but of course it never happens at the doctor's!

Thyroid problems in ME can be atypical and may not be picked up by standard tests. Most UK GPs don't realise this. They're bound up by NICE guidelines, which are singularly unhelpful when it comes to assessing functional hypo- or hyperthyroid states. I don't really know what to do about it, to be honest, as most of us can't afford private medicine.

EDIT: sorry, you posted at the same time as me – please ignore suggestions about monitoring, as it's already been done!

 

[valentinelynx]

I'm glad you ruled out cardiac... assuming you had some episodes while you were wearing the monitor?

Another thought is the Periodic Paralyses. They are rare, but that doesn't mean impossible! Here's a good introduction. I hope you find an answer.

 

[sunshine44]

ugh have been dealing with SAME stuff for 3 years now, eating through night for 2 years. It is exhaaaausting. Thyroid fine a million times over by all kinds and sorts of testing from regular and functional drs. I wake up in these horrible heat episodes with tachycardia and starving and it is something connected to adrenals and hormones yet I am in no place to expirement with hormones right now, I know I do have low levels of certain hormones.

I wish I had an answer. It gets worse around hormone cycles for me. I have found very few people with these level of intensity. It is seriously one of my largest issues. I also get the weak arms and legs.

 

[BeADocToGoTo1]

A few thoughts to throw in the mix.

Regarding the thyroid, the best book I came across was The Paleo Thyroid Solution by Elle Russ. Many doctors still just test TSH, which clearly indicates they do not understand how the thyroid works. Free T3, reverse T3, TPOAb, TgAb tests are often not done, even though they should be standard when checking the thyroid function. Magnesium, selenium, iodine and a few others are often deficient. Some thyroid issues can be due to or exacerbated by nutrient deficiencies.

Regarding the heart issues, again some things are not considered by 'standard' doctors are nutrient deficiencies. A good book to consider is Metabolic Cardiology by Dr. Frank Sinatra (cardiologist). I had many months of heart issues and spells of low 20s bpm. CoQ10 and carnitine were key in resolving it. It took a week on a few supplements to support the mitochondria (crucial in heart cells) for issues to be resolved. This to the utter surprise of my cardiologist who was talking about ablation, statins and a pacemaker.

A little side not on the measurements. It is good to add the unit of measurement with test results since European and US labs often use different UOMs, in addition to the comma in e.g. Germany or Holland versus the decimal point in the US.

 

[Moof]

I've now discovered that it's possible to get a comprehensive thyroid and vitamin status test done in the UK relatively cheaply (£64, with a discount code from the Thyroid UK charity), based on a pinprick blood test you can do yourself at home. I don't know whether this could be an option for you? I found the information here:

http://www.thyroiduk.org.uk/tuk/testing/thriva.html

 

[Wishful]

Is Tsh supposed to be held in a really narrow range, such as <3.0 or at least <5? Mine was in the normal range when I first developed ME, was around 5 for a few years, and was >8 a year or so ago. I haven't noticed any change in how I feel with those different Tsh levels. I still think that my Tsh is being driven by elevated kynurenine production, so maybe that makes a difference.

 

[pattismith]

The last time i had it checked was about 2 month ago, TSH was 0,91 and T3 was 4,9 at that time.

.

TSH Range was 0,27 - 4,20
(i am not sure why the list is in commas rather than bullet points but i believe it is definitely bullets)

FT3 4,3 - 6,7

This means that both your TSH and your fT3 are in the lowest quarter of the normal values.

It is a low T3 state, or a low T3 syndrome, which is not considered as a "thyroid disorder", which means that thyroid is not the culprit.

This is considered as a pituitary hypersensitivity to T3, or a peripheric deiodination disorder.

Suplementation with thyroid hormons may not be the answer.

I tried it, but I couldn't get relief with a daily intake. Even with a small T3 intake, my TSH was supressed, but I was not cured;
Taking Thyroid hormons will raise your sex binding globulin level, and so your free testosterone level will drop which may put you in a bad situation. (NB Taking estrogens will have the same effect).

I struggle a lot Under T3 supplementation, but I also struggled a lot to stop it. It was a long story!