Hypothyroidism or not? please help!: Hello... - Thyroid UK

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Hypothyroidism or not? please help!

Louise199 profile image
14 Replies

Hello everyone! I'm writing, because I truly am so unsure on what I should do right now, I'm at a complete loss, and I'm under a great amount of stress. I haven't gained any weight yet whatsoever, but I have been experiencing most of the symptoms of Hypothyroidism,I feel tired and want to sleep every single evening no matter what time I go to bed at night, or wake up in the morning, I still feel fatigued all day, and come 5pm, every single day I'm ready to go to sleep. My hair has been falling out, it's become dry and brittle, it's become so thin which has upset me because I've always had long thick hair. My nails are brittle, I am constipated, and I feel cold all the time, especially in my hands and feet, they become so cold that my fingernails turn blue. My voice is slightly hoarsem and my face seems to be puffy on one side, so it makes my face out of shape. I've been depressed, but that;s because of how stressed out I am about all of this. I went to the doctors, and he did a blood test, which showed my TSH levels within normal range. After hearing that I had some feeling of relief until I read online that it's not always effective, and more tests may be needed. I've been constantly on edge, stressed out, crying every single day about this, and even though I've made another appointment to see the doctor, since my mum told me that if I'm not satisfied with the test results then I can go back, I just don't know what the doctor will do, I'm afraid that he won't even attempt to make anymore tests, and tell me that it's all in my head, and I'll go undiagnosed, and my absolute biggest fear right now is gaining weight, I've always been a slim girl, and my body has always been in great shape, and knowing that I could have this condition and seeing online how much weight people gained, I've become extremely weight conscious, and I'm eating weight watcher meals. My doctor weighted me while I was there, this was about 9 days ago, and he told me that I was at the exact same weight as I was 4 years ago. I just don't know if hypothyroidism is what I have, but I don't feel normal at all, I don't feel like me, I don't even feel like I'm in my own body half of the time. My question is, if I had hypothyroidism, would I have all of these symptoms before gaining weight? Or is weight gain one of the earliest symptoms? Any insight from any hypothyroid sufferers here on what is going on with me would truly be more than greatly appreciated. Thanks! :(

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helvella profile image
helvellaAdministratorThyroid UK

Louise199,

In hypothyroidism, weight is a more complicated issue. Your actual weight is the result of all the usual things plus:

Losing muscle mass;

Varying amounts of "mucinous deposits" - effectively gel-like watery substances throughout your body. Often identifiable as swelling that, when pressed, does not show pits;

Poor absorption of many nutrients.

Changes in weight might suggest an issue that needs further looking into, including checking thyroid issues, but no change absolutely does NOT mean you do not have a thyroid issue.

TSH alone is inadequate. You need at the very least a Free T4 and preferably a Free T3 test.

It would also be appropriate, in my view, to be tested for iron, vitamin B12, full blood count, vitamin D, Thyroid Peroxidase antibodies, Thyroglobulin antibodies, and anything else that the doctor is willing to request.

Louise199 profile image
Louise199 in reply to helvella

Hey, helvella!

Thank you so much for your reply! When the doctor gave me the paper stating the blood test request, I honestly only saw TSH on there, there was no t4 or t3 on that list at all, and definitely not Thyroid Peroxidase antibodies or Thyroglobulin antibodies. I did see b12 and folate, ferritin (which if I'm correct, is iron) on there, but I'm not sure how a full blood count would look in initials on the request list, but there was a lot of tests there to be done, but I did read through it all with my mum, and regards to thyroid, it only said TSH (for screening) on it. Both my mum and my nan have had thyroid disorders, my mum was hyperthyroid, which she took meds for, and it corrected itself, and my nan is still on meds for hypothyroid for the rest of her life, so I know I've definitely got that high chance of having it since it's been in the family. But as far as these t3 and t4 tests go, would I have to discuss these test options with the doctor when I go back to see him helvella?

helvella profile image
helvellaAdministratorThyroid UK in reply to Louise199

Louise199,

Difficult to know as the processes vary - could be as simple as "FBC" but could be some code.

Thyroid tests are often requested as "TFT" (thyroid function test) which should mean that anything odd in TSH sees FT4 tested, and if that is odd, FT3 as well. But all too often we see only TSH.

Sadly, even after discussion with your GP, you might not get any further tests done. Are you in a position to get a private test done?

Louise199 profile image
Louise199

Hey helvella,

It truly is all so confusing how they code things out. I can definitely say there wasn't a FBC or TFT in that list at all, or anything close to that, so I guess he must have only checked my TSH levels. And I honestly agree with you that even after discussing this with my GP, I won't be referred for anymore tests, this happens way too often to so many people. :( And as far as getting a private test done, where would I have to go for this? and how much would it cost helvella?

SeasideSusie profile image
SeasideSusieRemembering in reply to Louise199

For Helvella to be notified that you have responded to his message, you need to reply by using the green REPLY button immediately below his post or tag him by putting @ directly in front of his username and click on his name from the list that pops up and it will turn blue and notify him, like this helvella

Louise199 profile image
Louise199 in reply to SeasideSusie

Thanks SeasideSusie ! :) I'll remember that from now on.

helvella profile image
helvellaAdministratorThyroid UK in reply to Louise199

Louise199,

Details of private testing here:

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

Also, regular posts of "special offers" appear here.

Thanks SeasideSusie

Louise199 profile image
Louise199 in reply to helvella

Thank you helvella I'll have a look at those right now. :)

shaws profile image
shawsAdministrator in reply to Louise199

In the NHS, I believe the initial tests are only TSH and T4. They diagnose by these results when it would be more accurate to also include Free T4 and Free T3 and thyroid antibodies.

Don't be over-stressed about your weight, I was diagnosed with Hashimoto's 15 years ago and didn't put on any weight, either before or after treatment. Like you I didn't feel normal, knew something was wrong somewhere and had all the symptoms (apart from weight gain), chronic constipation, hair falling out, irritability, fatigue etc.

As Helvella has already said you need as many tests as you can get, TSH doesn't give the full picture and there may be other deficiencies which may be contributing to how you feel. I would eat a healthy diet, all homemade if you can manage it and avoid soy.

Louise199 profile image
Louise199

Hey Hidden ,

I'm so sorry to hear that you were diagnosed with Hashimoto's. I really hope that you're feeling much better, and normal again now that you've been treated, and I'm really glad that you didn't have an issue with your weight at least, but very sorry that you had to suffer from those other awful symptoms. I have honestly recently looked up on Hashimoto's and suspected that this is what I might have, and it does seem more likely since we've both experienced the same symptoms minus the weight gain(so far). Did you also have blood tests done that came back as normal before you were diagnosed?

in reply to Louise199

Hi @Louise199, thank you, I certainly did feel better once I was on Levo but my journey through those 15 years has been slightly chequered. At the time of my diagnoses I was 60 and was rather reluctant to see the GP because of my own opinion that GP's look at 60 year old menopausal women as being rather hysterical and in need of antidepressants. I had a BUPA health check which showed elevated TSH, my doctor then did another TSH test to confirm and prescribed Levo. At that time I joined Thyroid UK and received twice yearly magazines but I was still working full-time, I felt better and symptoms disappeared so I just carried on with life and didn't pay too much attention to it.

In 2011, (by which time internet access was available) I had an awful down turn when my TSH sky-rocketed (44 at one time). Getting no-where with the surgery I had another private blood test which showed auto antibodies TPOAb and TgAb (I think these are the right ones) - so it was only really at that point I knew for sure I had Hashimoto's - I may have had it all along but I was really ignorant about my own condition, although the treatment for both is exactly the same.

It is my understanding that you can have auto antibodies with a normal TSH along with many of the symptoms of hypothyroidism so again, it is important to test much more than your TSH. Raised auto antibodies will cause inflammation and can be reduced to avoid further damage to your thyroid.

Cassie

Rmichelle profile image
Rmichelle

Hi go back to your gp or go to a different one and again go in more armed with knowledge of bloods you need done as you are showing symptons, sometimes we have to be very persistent to make some docs listern, i too have hashimotos and now hypo but originally hyper in july, stay strong and it is never the end there are always ways around with private testing and also buying your own treatment although costly but when needs must. It took me a few attempts to get tpo done with my doc but my continual annoyance paid off. Dont give up!😊😊😊😊

SlowDragon profile image
SlowDragonAdministrator

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

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