Hello folks - im new to this forum, so if i mess up how it's done, forgive me. Anyhow - for the past 2 years i've been poorly. For the last 6 months illness has progressively become worse. Having been tooing and frowing the doctors, yestarday i had the diagnosis of Auto immune attacked thryroid. I know nothing much about the illness. I've been given 50ml dosage of Levothyroxine to take daily. The question i have is this. For the best part of the last 6 months i have been unable to walk properly or without pain 80% (there abouts) of the time. I spend most of my time being asleep. Im in cronic pain with my joints (been tested for various arthritis, but nothing showing in tests) Is there any possibility the the pain and exhaustion are connected with the Thyroid issue? My doc said i should start to feel a little better soon, but seems perplexed by my exhaustion and chronic pain. I'd appreciate any views or experiences anyone has had or if you views are that my symptons do not fit with a Thyroid problem, please do say. Many thanks. Helen
Welcome Helen. I have Hashimoto's also with hypothyroidism. Hashimoto's causes hypothyroidism in some people after your body has destroyed some of your thyroid. Hypothyroidism is when your TSH (thyroid stimlulating hormone) is on the high side. Hyperthyroidism is when your THS is on the low side. It is a little confusing being they are opposite of each other. High-hypo, low-hyper. The symptoms of hypothyroidism is fautigue, hair loss, brain fog, weight gain, constipation, feeling cold all the time, dry skin, aches and pains and possible slow heart rate, among others. Hyperthyroidism symptoms are anxiety, sweating, heat intolerance, aches, pains, fast heart rate, papiltations, diarreha, claminess, and weight loss, among others. With Hashimoto's it is common to go from being hypo to hyper for a while until most of your thyroid is destroyed, at which that point, most people stay hypo for the rest of their lives. You are Hypo right now and that is why your doctor gave you levo to help lower your TSH. It can take around 4 to 6 weeks for the levo to build up in your system before you feel any real changes. Yes... aches, pains, joint pains are all common with hypothyroidism for many around here... I myself have pains in my upper back, neck, lower back, hips, outer thighs and the heels of my feet. The levo should eventually help with all of that IF there is nothing else going on with you. It is very common for people with hypothyoidism to be low on vitamins and minerals also. Some that you should have checked are
Vit D, Vit B12, iron, magnesium, zinc, selenium. Can't remember if there are others. Being low on certain vitamins and minerals can cause many symptoms within itself. I'm sure others will be along shortly to give more advice.. Good luck Helen!
Oh.. and ferritin and your electrolytes.. sodium and potassium, and your calcium should be checked also.
Hi Helen,
Yes the symptoms you are suffering with could definitely be caused by underactive thyroid.
I suffer with both too.
A piece of advice for when your doctors are testing your levels with medication, they will usually test (in the UK) for Tsh (thryoid stimulating hormone) and T4 levels. Levothyroxine is a T4 medication and is meant to convert a lot of this into T3 hormone. However, not everyone does automatically and may need a combination of T4 and t3 meds. Your t4 and tsh results may come back "normal" and won't give an indication of whether you need more t3, so request that they test your "free T3" levels as well.
Lots of people on this forum suffered for a long time being on levothyroxine and still having symptoms and I wish someone had told me when I was diagnosed (I found out this info 8 years later).
Some people do fine on levothyroxine alone, but worth checking t3 levels if you are still feeling lousy x
Aww thank you for this reply, thank goodness, i felt as tho i was going mad having these symtoms but no obvious reason why. All those pains you mention is what i have been having. I don't feel quite as crazy now :-)
I have to go for blood test at the begining of April. TFT is being tested, TSH has been crossed out on the bloods form. I didn't realise people sufferred for years without being tested - that's madness. I thought 2 years was a long time. The doctor gave me the impression that once i have the levo everything will go back to normal (whatever normal is) Thanks for the advice, i appreciate it.
I wish one pill of levothyroxine would fix everything. Yes... for some people it does. But not only that... it can take years to even get your levels right with levothyroxine for some. I have found out I have had Hashi's with hypothyroidism over 3 years ago and have yet not been able to get my levels right. For example.. after a dose increase a month ago because my TSH was high, I just had blood work to see if the increase worked and here my TSH actually went even higher instead of lower! So he inceased my levo even more. In the over 3 years I have had this... my levels have NEVER been in range yet. It gets frustrating. Hang in there. Hopefully you will have a good doctor who will work with you and dose you based on your symptoms. Aslo one that will check your FT3. Not all doctors will. Mine won't. I have never had them checked. I think I am going to switch doctors or pay for private blood work off the internet.
Hi Helen tft stands for thryoid function tests (Tsh and T4). Yes it's sad people can go for so long. Levothyroxine is the cheapest medication to treat this and some doctors often wont prescribe anything else if this doesn't work for you. I was unfortunately diagnosed with the condition as I have similar symptoms to you and my Tsh was slightly higher than normal, but my antibodies were normal and I don't have hashimotos, so now they think I never needed medication in the first place, so trying to wean myself off levothyroxine to see what happens.
It is a condition that is really poorly understood considering how common it is.
The name of the T3 medication that the Nhs can prescribe is Liothyonine, just in case you ever get to that point (fingers crossed that levothyroxine will work for you though)
It's been a real battle for me with the nhs as they seemed to be very concerned about cost rather than the best course of treatment for me. I ended up seeing a private endocrinologist who suggested I have been massively over-medicated for years.
This forum is great for information and I wish I found it sooner. Hopefully with the right help you will get the right balance of medication sooner rather than later x
Sorry.. don't mean to scare you. Like what was said... it does work for some people with levo. I pray you are one of them and goes well.
If you do find you are still having issues after starting treatment, I would really recommend asking for a referral to an endocrinologist who specialises in thryoid issues- it's best to get an expert to look at you and run the tests the other lady described before it gets to the stage where you are really suffering x
Oh no - you havent scared me at all - no worries. It's good to get real feedback from people who have the experience. I think ill do some reading up as clearly it isn't as straight forward as i first thourght.
What is Hashimotos? Doc told me my was cuased by antibodies attacking he thyroid - is that the same as you?
Hashimotos disease is the main cause of underactive thryoid in Caucasian women (about 90% of women with underactive thryoid have this cause).
When they test your thyroid antibodies they are testing for hashimotos disease - double check with your GP, but it sounds like that is your diagnosis. It's a condition where the body attacks it's own thryoid.
It's not the case with me as my antibodies were within normal range. There aren't many other causes, which is why they are debating whether I had it in the first place. The main other cause is iodine deficiency, but this is generally only common in developing countries (not in the UK or US).
There are lots of books on hashimotos disease - probably listed on the thyroid UK website if you are interested x
Hashimoto's thyroiditis, or inflammation of the thyroid gland, is an autoimmune disorder. That means it is caused by a malfunction in your immune system. Instead of protecting your thyroid tissue, your immune cells attack it. These immune cells can cause hypothyroidism (underactive thyroid), a goiter (enlarged thyroid), or both. Eventually, the thyroiditis process can even destroy your entire thyroid, if left undetected or untreated.
In Hashimoto's thyroiditis, large amounts of damaged immune cells invade the thyroid. These immune cells are called lymphocytes; this is where Hashimoto's other name—chronic lymphocytic thyroiditis—is derived from.
When these lymphocytes enter the thyroid, they destroy the cells, tissue, and blood vessels within the gland. The process of destroying the thyroid gland is a slow one, which is why many people who have Hashimoto's thyroiditis go many years without any noticeable symptoms.
Because the thyroid is essentially coming under attack from invading cells, it isn't able to produce as much thyroid hormone as it normally would. Eventually, this causes hypothyroidism. And in extreme cases, the immune cells can cause the thyroid to become enlarged and inflamed to the point that it produces a visible mass in the neck—a goiter
The cause of Hashimoto's is thought to be a combination of a genetic predisposition along with an environmental trigger that starts the process of autoimmune destruction. What actually triggers the immune response against the thyroid gland remains unknown. Additional factors, including heredity, gender, and age, also play a role in developing this disorder.
Triggers also like.. stress, viruses, parasites, are also considered possible triggers for an autoimmune response. Along with if you have food sensitivites such as gluten, soy, corn, dairy...
Hello and welcome,
I too have autoimmune hypothyroidism. I'm not medically qualified, but I have learnt a lot in the 25 years since I was diagnosed. Though it is really complicated and there's still lots I don't know. As far as I can work out not all autoimmune hypothyroidism is hashimotos, however all hashimotos is autoimmune. This is easier to understand if you think of the analogy 'not all animals are dogs, but all dogs are animals'.
With hashimotos people reportedly swing between hyper- and hypo-thyroidism until it eventually settles on hypothyroidism. I didn't have the swings people mention, just a gradual, relentless, decline. It took me 15 years to be diagnosed.
With regard to aches and pains, yes I got those. Shooting pains, as though I had been stabbed. My muscles were weak and my knees used to bend backwards (big ouch!). This is because my ligaments were too loose/stretchy and didn't hold my knee stable when my muscles were too weak to do so. Feeling cold all the time, right to my core. Overwhelming fatigue, slept for 11 hours a night and didn't feel rested - it was though I hadn't been to bed. Really cold all the time. Soft nails, like tissue paper; putting on weight. These are all symptoms of hypothyroidism. It's unbelievable that one medical condition can cause so many symptoms, until you realise it results in you not metabolising (converting) the food you eat into the nutrients and energy that your body needs to work, then it all makes sense.
Do ensure that as a minimum your doctor tests your Ferritin level. If it is under 70 (some say 90) your body won't metabolise the thyroxine properly. If your ferritin is low, it is likely you will need to take iron tablets for a while. Two vitamins that are often low with hypothyroid people are vitamin B12 and vitamin D. I avoided being low for these as I took a multivitamin with iron for years - but my Ferritin still managed to be 15!
There are two things you need to know about blood tests. Firstly, on the day of the blood test, don't take that day's thyroxine dose until after you have had the blood taken (else it gives an artificially high riding for the level of thyroxine (aka T4) in your blood.
Secondly, always ask for a printed copy of the results. This is so you can see for yourself where you come in the range (the range is normally printed in brackets next to your result), and you can build up a picture of how they are changing over time.
Do get a copy of the blood results you have already had taken. They are very informative.
Sorry for typo. For 'artificially high riding' read 'artificially high reading'.
So, is all autoimmune hypothyroidism hashimotos?
Hi Barbara I didn't realise that you shouldn't take thryoid meds before a blood test - how did you find that out? I always take it first thing in the morning but I will wait next time and take it after the test and see if it differs.
I don't know whether all autoimmune is hashimotos I just assumed it was but I have never suffered from it so I'm not an expert. X