Very desperate

[Nikissilly77]

Levothyroxine has only exarcabated symptoms. Would like to see endocrinologist but cannot seem to get referral and/or anyone to take my symptoms seriously (out of breath, chest pains, nausea, rapid weight gain: 15 lbs first year and 14 lbs in last 2 months alone despite exercise and healthy eating) Would greatly appreciate any help...id really love if it if dr prescribed NDT from all the testimonials...but feel so helpless when issues not taken seriously.

[Mandlou]

Out of breath... are you anemic or b12 deficient ? That makes u out of breath x

[Nikissilly77 in reply to Mandlou]

will get those tests...thank u so much for info

[Hidden]

Please post your latest bloods. I am tending to advise people not to see an endo as it is often counter productive and they can be very unsupportive. There is a list of more helpful doctors available via website. Thyroid illness is quite complex and there are a lot of factors that come into play that can effect how well you respond to levo. Your doctor should have taken vit B12, vitamin d, folate and ferretin all of which are needed for good thyroid function. We also need to see the results are you latest thyroid panel to advise better. YOu need to stop all this exercise and undereating it will only make things worse by reducing the amount of T3 or active thyroid hormone available and cause weight gain. You need to eat the right number of calories for your weight, and activitys levels and have some gentle movement such as yoga or walking in the park. Be gentle with your self. You may want to try being gluten free as this helps a lot of thyroid sufferers and it is a good idea to cut out most refined sugar and caffeine. Meditation eg Kabot Zinn is great to help you manage your symptoms.

[Nikissilly77 in reply to Hidden]

thank u so much ..for all the info. i will post my thyroid labs aftervwork. i have received more helpful info here in 10 min than almost 3 yrs with medical field

[Nikissilly77 in reply to Nikissilly77]

ive only had the basic thyroid test 3 times in last 3 yearz....this is the result in May 2016

Thyroid Stimulating Hormone

Your Value

5.02 uIU/mL

Reference Range

0.40 - 3.99 uIU/mL

this is result in August 2017

Your Value

5.86 uIU/mL

and most recently was

Your Value

4.96 uIU/mL

so i guess is better but still dont feel any better whatsoever, in fact worse than in 2016. So i think more blood/labs are in order if can get convinced i need them. I am switching clinics as the current one cannot get me in until May 23rd.

i am taking notez of all the wonderful recommendations and realize i have lots of research and work to do. I really do appreciate u all helping me as I am so naive to all this and cant beleive i didnt figure all this out sooner. When you have kids they of course come first, but cant be a very good mom when you dont feel good, so its time to take charge.

[Nikissilly77 in reply to Nikissilly77]

i should note, in desperation i bought the Thyrovanz brand of NDT 25 mg( hasnt arrived yet) but realise i do have far too much to research before being so hasty.

[Hashihouseman]

Too much levothyroxine, particularly all in one go, can exacerbate or even cause tissue hypothyroidism through negative feedback on the critical enzyme that converts T4 to T3. If your dose of levothyroxine is having this affect you could try splitting it but as others are likely to say blood test data and details of replacement hormone history is essential for analysis of what may be going on….And yes Unfortunately many doctors and endocrinologists could make you feel worse with a reductionist attitude or even inference that you are imagining things! That said it may be prudent to persevere with finding clinical support for your condition and overall well-being.

[dtate2016 in reply to Hashihouseman]

I know it’s hard to do these things when you don’t feel well but you have two really great replies here. T4 only just doesn’t work well for most of us with Hashimoto’s and the conversion problem is the reason why. And you do have to stop the exercise until you get things under control the weight gain is the least of your concerns right now.

Selenium and digestive enzymes and yes gluten-free are the first things to help you stop the antibodies and help your body convert some of the T4 to T3.

Please post back and let us know how you’re doing and which of these things works for you you can feel better very quickly when applying these things.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

How much Levothyroxine are you currently taking?

Is it always the same brand?

Which brand?. Many patients react very badly to Teva brand of Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Have you ever had thyroid antibodies tested

Or vitamins

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Add results, if you have them

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results and ranges

[Gambit62]

could you say a little more about what treatment you are on? If you have just been started on levo then it may be that the dose is just too low for you at the moment. I was started on 25mcg and that left me positively suicidal.

Now taking 100mcg

[MaisieGray]

In your other post, you wrote "i am also experiencing horrible thyroid dysfunction on levo 75 mcg...have upped over last 2 years with no relief", and if it has taken you 2 yrs to get to 75 mcg, there's a very good chance that it is too little a dose of Levo that has kept you symptomatic, rather than that Levo has exacerbated things. As has been suggested, if you post your most recent blood test results and their reference ranges, folks can advise more specifically.