How I’m feeling lately

[Mandy1]

Hi I was diagnosed a couple of years ago now but over the last 6 months my meds have been increased but still really poorly some days i struggle to get up and get severe pains in my legs , struggle to breathe I also struggle to swallow on a daily basis and cough constantly but feel like everything is battle but when I speak to my doctor I feel like they dismiss what I’m saying I’ve now being diagnosed with high blood pressure to so this doesn’t help either

[greygoose]

Sounds as if you're under-medicated. In which case, the high blood pressure is probably due to your hypothyroidism. High BP is not a disease, it's a symptom. So, that wasn't really a diagnosis - you can't diagnose someone with a symptom.

If I were you, I'd get copies of my blood test results to see what's going on. What have they been testing, and what were the results? If you post the results here, with the ranges, people will be able to explain them to you.

[Mandy1 in reply to greygoose]

Tsh 2.42 in feb

[greygoose in reply to Mandy1]

Is that all they test? Not adequate. You need your FT4 and FT3 tested, too.

Having said that, you're obviously under-medicated because the aim of treating hypo is to bring the TSH down to 1 or under - wherever it takes to get your FT4/3 into the upper half of their ranges. So, you need and increase or two in levo. And, I'm willing to bet that your high blood pressure is dut to being under-medicated.

[Mandy1 in reply to greygoose]

Oh ok thanks I will definitely look into this now but I have not really understood anything that is happening to me and what under active thyroid really means and not been able to speak to people who have the same problem so I’m really grateful for any advice

[greygoose in reply to Mandy1]

thyroiduk.org/

This is a good place to start learning about your condition. It will explain all the vocabulary and talk about testing and symptoms, and all the rest. It's really important that you learn about it all because your doctors obviously haven't got a clue! If you have any questions, don't hesitate to ask on here.

[SlowDragon Administrator]

How much Levothyroxine are you currently taking?

Do you always get same brand of Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many people need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

What vitamin supplements do you currently take?

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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

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

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

See GP for 25mcg dose increase in Levothyroxine and request that vitamins and thyroid antibodies are tested

[Mandy1 in reply to SlowDragon]

Ok thanks that’s great advice I will look into all of this as I’m currently on 150mg levothyroxine and I always have the same make

[Hidden]

Hypothyroidism (low thyroid hormones), is likely to be the cause of all the symptoms you describe, including high blood pressure (as has been said). Have they told you what kind of hypothyroidism you have? The most common kind is Hashimoto's, or autoimmune thyroiditis, where your immune system somehow mistakes thyroid cells for an enemy and attacks them.

A TSH of 2.42 is "Within range", but may still be too high for you. Most doctors seem to be brainwashed into relying only on TSH, and as soon as it gets in range they assume you have to be fine! Except most of us are still NOT fine. I still had (and have) hypo symptoms when my TSH was well under range. I am now trying to "Pluck up courage" to see if I can get another increase in spite of TSH still being slightly under.

The doctor is neglecting you, especially as you haven't been tested since February in spite of continuing symptoms.

"when I speak to my doctor I feel like they dismiss what I’m saying"

Can you get to see a different doctor who might listen to you? Ask the receptionist for advice on best person to see for your particular concern.

It might help if you make a bullet list of your main symptoms and how they affect your life and give it to the doctor. Take a friend or family member with you - if possible someone assertive who will politely insist they take you seriously and do something to help you. I am fortunate to have a friend who is a trained nurse and not intimidated by any doctor!

If you can't get a face to face appointment (most of ours are telephone consultations - which I hate) you can use the list as a prompt. If all else fails write or ask to see the practice manager, or ask for a referral to an endocrinologist (which may or may not help, as some of them don't seem to have a clue about thyroid problems either!)

[Mandy1]

Thanks jnetti I will speak to my gp surgery and see what they say

[endomad]

I remember when i felt like that, i was in pain all the time, my hips, knees, ankles, feet, bones, joints and muscles felt on fire and walking was unbearable, i could sleep 18 hours straight and still be tired, everything was such a huge effort. I was fobbed off by my dr as menopausal, that age, obese, chronic anxiety, the list was endless. All those symptoms went once i was getting enough of the right thyroid medication. This for me has been a self help illness my drs were useless x

[Mandy1 in reply to endomad]

I know you get the feeling that the Dr’s don’t really understand what under active thyroid is all about I’ve been told so many different things over the last few yrs being over 50 and all that goes with older ages lol but I always feel like I’m wasting their time so I want to be in and out ASAP

[endomad in reply to Mandy1]

You are in the right place to get well, post your test results and people will help you, we have all been through it. I still crash when i over do it but am a million times better than i was. I lost 5 years of my life to lack of proper treatment, so i read everything, looked for similarities with other people and followed what worked for them. People on this forum are so giving with their time and sensible advice, something totally lacking in the nhs. I am sending love, it is not a quick fix but you will feel better and learn what works for you xxx

[Mandy1 in reply to endomad]

Thanks you everyone has been so kind a supportive I will be on here a lot now lol