I was diagnosed with hypothyroidism about 6 months ago when my little boy was 5 months old. It took so much pestering the doctors to test and being fobbed off so many times and I was made to feel like i was going crazy.
Anyway, I'm taking 75mc of levothyroxine but I am currently feeling horrendous. I've been very anxious over the last few weeks, having heart palpitations, sweating, swollen neck and throat and basically all other symptoms of being iver medicated but have been told my bloods have come back in range so no more action to take. What do I do?! I'm at my wits end and I'm spending my days panicking that there is something wrong with me. I don't think ive been tested for antibodies.
I'm just after any advice really, would be really grateful as I feel like i can't do this for much longer
Written by
Njaner
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You are learning the hard way that "in range" and "normal" don't mean much - it's where you are in the range that matters. Also, if the doctor is only testing TSH (which so many do) you won't have enough of a picture to know what is happening.
Do you have any actual blood results (and reference ranges, which vary from lab to lab) to post?
Ideally, you will have TSH, free T4, free T3, thyroid antibodies and key nutrients - ferritin, folate, vit D and B12.
If your GP won't do full testing, you may want to treat yourself. You will see lots of posts here about private testing, usually a finger-prick test you do at home.
Please don't allow your doctor's inactivity to make you ill. Most doctors do almost no training on thyroid as part of their GP training, so don't know very much. Consequently, many of us on the forum have learned a lot about our illness to take control of our health.
I started on 25mg then went to 50, now on 75mg and told im in range.
I think i've been taking teva the whole time. I had something similar to this when I was first diagnosed my throat feels like someone is gripping it and my ears feel muffled. I'm on antibiotics at the moment and they have put it down to postnasal drip/tonsilitis the whole time and are adament its nothing to do with my thyroid.
How long have you been left on 75mcg levothyroxine?
Bloods should be retested 6-8 weeks after each dose increase
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.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Have you had thyroid antibodies tested
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood 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?
As SeasideSusie says ....different brands of levothyroxine are often not interchangeable
Teva brand especially upsets many people
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I am 54 now and have had thyroid disease that started 20+ yrs ago after my daughter was born.
I would just like to put a metaphorical arm round you and let you know that this does get better and you will feel more stable as you go along. Your whole system is currently still trying to re-balance after some big changes.
While you are waiting to get hold of your results [ask for TSH + hopefully FT4- with reference ranges, and any thyroid antibody tests] i just want to tell you you are not going crazy, you did well to keep pestering, you trusted yourself then.... keep trusting yourself in the future.
You have done well to find your way to this forum, it's a good safe place, with plenty who have been there before you. I wish i could have talked to other thyroid patients when i was where you are now.
GP's tend to treat you like 'i've fixed your problem now that i've given you thyroxine, thyroid is a simple problem ,anything else is not related , therefore you are making a fuss about nothing'
There are 108,000 members on this site that know different. Thyroid is not a simple problem, and it affects nearly everything.
I don't know how much you already understand about thyroid disease and the different forms it takes.
Thing's will be clearer as to the cause of you currently feeling like ?overmedicated when we can see your results, but until then here are some things to think about which may help you understand what's going on.
The TSH blood test (if this is all your GP has looked at) is actually a picture of the 'recent past' rather than actual events at the time of the blood test. This is why they make you wait 6 weeks for a blood test after a dose change.
In autoimmune hypothyroidism, (and the temporary postpartum kind) your actual thyroid hormone levels (FT4/FT3) will sometimes go up and down making you feel over/under for days/weeks.
There are some practical tests that nurses used to use to give a clue to over/under levels of Thyroid Hormones , whether from the body or from Levothyroxine [LT4]
a) pulse rate. (i'm not sure on the numbers, but someone else here will be )
b) 'fine tremor in fingers' - hold arms out in front, palms down, fingers loosely extended. Look for fine tremor in fingers. Tremor can indicate too much hormone.
Try these out on yourself and let us know what you find.
To get hold of your results , you may have to get past some guard dog receptionists first ! but don't let anybody make you feel like you are being awkward. It is becoming quite common for thyroid patients to expect to see their own results , they are your results and it is in your own best interests to be Knowledgeable about your treatment. Most GP's get about an hour on 'the thyroid' at medical school. It is also your legal right.
Just stay 'calm and assertive'... (or else someone might diagnose you as 'hysterical' !)
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Feel like I can't cope
Feel so ill
Why do I feel so poorly?
So lost
