Suffering with no answer help please: Months back... - Thyroid UK

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Suffering with no answer help please

anglfrmhvn69 profile image
18 Replies

Months back I had my thyroid checked results were normal but I still had symptoms of hyperthyroid had levels checked again still normal but it seems my TSH went up from last time but my t4 dropped ten more points. I'm tired of suffering and just want to feel normal. And I'm still having hyperthyroid symptoms and they are just getting worse and more persistent.

November 2015 thyroid results

Tsh 1.130 range (0.450-4.500)

Free t4 0.99 range (0.82-1.77)

Parathyroid 2.2 reference all ages <2.0

May 2016

TSH2.0600.450-4.500UIU/MLFinal01

T4,FREE(DIRECT)0.89- range0.82-1.77

T3 2.6PG/MLFinal03

REFERENCE RANGE:

>=20Y: 2.0 - 4.4

Can anyone help me understand with these results if one can have hyperthyroid symptoms?

My symptoms has gotten worse heart races flip flops off and on for no reason I can't do things makes it race.my bp is up and down all the time and I'm on bp med. I have anxiety to the extreme as I've never had anything like this at all. I can't sleep at night I'm so fidgity I can't sit still. Everytime i doze off I'm woken with adrenaline upon my chest and zaps me awake. I can't tolerate no kind of weather now this year I'm very heat intolerant never have been before I go out I feel faint dizzy. That's another thing I stay woozy headed all the time,my cycles is all over the map I don't know how to keep going when nobody will help me. I have been to drs so many times to be told anxiety I know my body and something isn't right. I'm scared I'm gonna have a heart attack the way my heart acts up out of the blue. I get hot very easy I have dry skin hair falling out alot it's very thin now. I have air hungar like I can't get a breathe at times.bloating the list keeps going and going my main symptoms is the woozy head constantly and the heart racing flip flopping and the bp spikes does this sound like thyroid trouble it does run in my family but i keep getting told I'm fine I'm not fine. I had to quit smoking due to these symptoms getting so bad yes I needed to quit smoking and glad. I just want my life back I cry everyday and nobody believes me these things is very real and not in my head

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anglfrmhvn69
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18 Replies

I am afraid I won't be able to offer much concrete help, but your T4 levels and TSH don't indicate hyperthyroidism...if anything, your FT4 levels are on the low side. But some of your symptoms seem more consistent with hyperthyroidism than hypothyroidism...however, I doubt any doctor would be willing to diagnose you with either unless your TSH warrants it. And it did not change that drastically in the six months between tests, which makes me wonder if your symptoms are mainly thyroid-related...?

Maybe it would be a good idea to have your adrenal glands checked.

Sorry I cannot be of more help, but there is so much expertise in this forum that I am sure someone will be able to chime in and give you much better advice!

123harry profile image
123harry

have you had b12, iron, ferritin,vit d checked? these all cause the same type of symptoms and can be fairly easily remedied

anglfrmhvn69 profile image
anglfrmhvn69 in reply to 123harry

Yes I've had these all checked back in Nov I was slightly low on iron was checked a few months ago they were normal and was told to stop taking iron pill. The other things was normal

greygoose profile image
greygoose

Have you had your antibodies tested? TPOab and TgAB. You could have Hashimoto's Thyroiditis.

anglfrmhvn69 profile image
anglfrmhvn69 in reply to greygoose

I don't think I've had them all checked but I think I had one checked tpo or something I'll look on labs to make sure

humanbean profile image
humanbean

Your symptoms sound like the ones I had when I had severely low iron. Your doctor is unlikely to test iron, what he is likely to test instead is ferritin (iron stores) which 123harry mentioned above. You definitely need to get your basic nutrients tested as soon as possible.

stopthethyroidmadness.com/f...

The other possibility is that you have cortisol problems. (You could have both problems - low iron and unhealthy cortisol levels.) Both high cortisol and low cortisol share some symptoms so it isn't possible to guess which you have, instead you must have it tested. The doctor, if asked, might do a cortisol blood test, which isn't helpful in many circumstances. What you need instead is a saliva test called an adrenal stress profile. Unfortunately the NHS doesn't do such a thing, it would have to be paid for privately.

stopthethyroidmadness.com/a...

stopthethyroidmadness.com/ps/

Getting your nutrient levels right should be your first priority. Without that nothing works properly. Worry about adrenals/cortisol a bit later.

Very strange that your hyper symptoms are not even suggested by blood results. I believe you can email louise warville on this site to get a list of helpful endos. Has GP done a ECG are you on any medication? Asthma medication has done similar things to me. I would definitely cut out caffeine you could be very sensitive to it and if you are drinking a lot could produce a lot of these symptoms. Ferritin, vit d and b12 also need testing as someone else mention. I think low ferritin is a possible cause especially if hair falling out. Insist on ferritin and dont let doctor phob you off with usual iron test. If that doesnt help I have been greatly helped by a homepathic doctor for my hypo symptoms. It may be worth a try although I realise it doesnt help every one. Low ferritin would produce air hunger, hair loss and I imagine racing heart as your body trys to pump more oxygen arounds that you will be lacking due to iron being oxygen carrier. Heart racing can be very frightening and that would raise your adrenaline causing all this fidgeting and anxiety symptoms. May be worth using some meditation like mindfullnes to reduce adrenaline. This all warrants furthur investigation by a GP and maybe endo. Have you been seeing same GP . I often find that if I dont get what I want with one GP can see another in the practice and get the test etc that I want a week later.You do sound poorly but I dont think this is life threatening just very uncomfortable.

anglfrmhvn69 profile image
anglfrmhvn69 in reply to

I have had my ferritin levels check Im no longer low as it as just checked recently again.i be seen three different drs in same practice which the other two look at labs and say normal and do nothing

rosetrees profile image
rosetrees

That sounds adrenal to me. Order the saliva cortisol test from Genova UK. You can order it via the main ThyroidUK website (thyroiduk.org.uk). Look for private testing in the menubar. The alternative is the DUTCH test (dutchtest.com) which tests adrenals and sex hormones.

NEVER guess with adrenals, as humanbean above says the symptoms of high cortisol and low cortisol can be very similar. Always test first. The NHS won't help you as they only test for Addisons or Cushings and nothing else.

Ruthi profile image
Ruthi in reply to rosetrees

Hear Hear! My thoughts exactly!

Alexkjones profile image
Alexkjones

I have experienced all the symptoms you mention. I have graves hyperthyroidism. I experienced the symptoms you mentioned when I was medicated to be hypothyroid. I think the adrenal system picks up the slack and that feels just blood awful the air hunger and heart flip flops and anxiety. It lasted about 2 months for me and then my tsh came back below 1 and all the shitty symptoms vanished. Alex

anglfrmhvn69 profile image
anglfrmhvn69 in reply to Alexkjones

Thank you for replying how do I get someone to take me seriously I'm tired of suffering so bad I'm going back to the Dr Wednesday

Alexkjones profile image
Alexkjones in reply to anglfrmhvn69

Where do you live? Which city? Ask people for dr and Endo recommendations on this forum.

anglfrmhvn69 profile image
anglfrmhvn69 in reply to Alexkjones

I'm in Charleston WV

Eddie83 profile image
Eddie83

Speaking from personal experience (Hashimoto's & hypothyroid):

Air hunger is hypothyroid.

Woozy head (brain fog) is hypothyroid.

Anxiety is usually hypothyroid in combo with adrenal insufficiency/arrhythmia.

Heart racing isn't necessarily due to thyroid. Can be adrenaline.

Hair falling out is usually hypothyroid.

High or low blood pressure is usually hypothyroid.

You should take a look at hypothyroidmom.com 300+ thyroid symptoms and see how yours fit into that.

Are you tired & wired? A classic symptom for the combination of thyroid system failure and resulting adrenal stress.

Your FT3 is too low for good functioning. The "normal" range you were given is too low. My lab is now using 2.77-5.27 pg/ml for FT3, and you should be at 4.0 or above for good function. A TSH of 2.06 is above the 1-2 range which functional medicine providers want to see.

I think you need a full thyroid panel (TSH/FT3/FT4/rT3/TPO/TG). Chances are your TPO and/or TG antibodies are high. I doubt your problems have anything to do with hyperthyroid, but you could ask for a TSI test for Graves antibodies, to rule that out.

In addition to thyroid, you need to know if your adrenals are being pushed into stress by low thyroid. For that, you need a 5-sample saliva test to see the rhythm, and a 24-hour urine test to get an accurate estimate of 24-hour cortisol production. Also your DHEA level is probably low, ask for a DHEA-S test and don't pay any attention to the age-adjusted ranges, we should all be aiming for a level typical of a healthy 30-year-old.

Whether your doc says your nutritionals are ok or not, I would supplement. I'm well now but I'm still supplementing cuz I don't want to go even one step backwards. Make sure you are getting appropriate doses of the trace minerals, esp. selenium, zinc, iodine.

mark1994 profile image
mark1994

Hi, I can totally understand what your going through as I too have around 36 side effects from taking 175mcg levothyroxin. I had enough myself recently and was lucky enough to find and join this forum. Hang on in there as I am and follow the advise below and see how you get on. There's so much support from others in the same situation tha can advise. I suffer from everything you have mentioned and I'm told I could be allergic to the fillers on the levothyroxin, 8 years I have put up with these side effects and I have just found out through this site that levothyroxin comes in a liquid from as well, I also agree with all the comments below and I'm also going to follow this post and get these test done. You can go private to a nutfield hospital to have them done more quickly or blue horizons if I have spelt it correctly can help to, I do believe there is a small fee involved, but worth every penny if it gets results. Good luck and hang on in there, things can only get better, Ps I was also told it was all in my head but we no in ourselves when something isn't right. I couldn't even brush my own teeth this morning and needed help,im only 42 and yet I find this illness can be degrading and humiliating at times because I swing from hypo to hyperthyroidism. I will keep you posted if I find anything helps when I get my results back. Remember your not alone with this!

anglfrmhvn69 profile image
anglfrmhvn69

Thank you all for replying I'm going to demand a referral to a endocrinologist I go to the Dr on Wednesday. I will be asking for every single test to be done that has any involvement with thyroid. I'm alittle scared going to feel these things and not be able to live life for the rest of my life it's been a hard struggle .

SGRIESE profile image
SGRIESE

Hello,

Just wondering if you ever got answers/relief from your symptoms?

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