I had thyroid toxicosis 3 years ago. My thyroid was overactive for a year and had reactions to both drugs that block thyroid hormone. I also have autoimmune hives whilst all this was going on. It then took nearly a year for my TSH to drop and finally was given thyroxine.
I had two specialists one told me it was Graves’ disease as I had the antibodies that caused this issue and the other told me that my thyroid has been destroyed by antibodies and spilt out thyroxine into my blood stream causing toxicosis.
So I was given 50mg and my thyroid went to normal after about 8 months of being on it. I thought great I can get my life back and get back to work. How wrong I was.
Since these events I have struggled to get my life back. I have been left with muscle weakness, fatigue.. sorry a fatigue that overwhelms you so much you can’t function just lay in bed.
I’ve tried so hard to keep trying. I tried getting back on my bike.. tried getting back to work.. but I can do things for a few days and then bam I can’t look after myself.
I had some other bloods and they found antibodies in my stomach. Which possibly meant that I had a issue with B12 apparently. However they said having autoimmune thyroid issues this can be a false positive and so they left it.
I’m left here.. now with no answers. Still not at work. With a few good days and mostly me being house bound.. with pain and fatigue. I’ve been suicidal. I’ve lost the plot.
I have a nurse that visits me. I’ve put a stone on in weight and now I’m Over 15 stone. I’m so unhappy.
My monthly cycle wipes me out. I sleep for three days basically solid while I’m on.
I had my bloods done and my TSH is high and my t4 is 6 apparently normal.
I need hope. I want to know what’s going on. I can’t live my life like this anymore. I get anxiety going out as the fatigue drains me. I shake when I’m tired. My muscles tremble the day after from hoovering. I feel constant burning pain all over everyday.
I’m 37 and my life is non existent. I feel very depressed anything please.. I’d be grateful.. i feel so so unhappy
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Zelda123
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Do you have recent blood test results and ranges you can add?
If not, you are legally entitled to printed copies of your blood test results and ranges.
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
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards, retesting bloods 6-8 weeks after each dose increase, until TSH is under 2. Many people need TSH significantly under 1. FT4 should be in top third of range and FT3 at least half way in range
Extremely common to have low vitamin levels. These need testing at least annually and frequently we need regular supplements of some or all of these to keep vitamins optimal
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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 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 .
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
You say your antibodies are high, this confirms that cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Getting vitamins optimal and Levothyroxine dose slowly increased are first steps
Poor gut function from hypothyroidism can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
Come back with new post once you get results and members can advise on next steps
Depression is common symptom of being hypothyroid.
Getting dose of Levothyroxine slowly increased can work wonders. Also very important to get vitamins tested if not been done
Even though some people are not coeliac they can still be gluten intolerant so it would be worth trying to go completely gluten free for 3 months to see if it makes a difference.
Hello I did go gluten free for about 6 months due to my hives and it really made no difference what do ever, I asked about it all.. I saw a private thyroid consultant he said going gluten free wouldn’t make a difference, both the hospital ones said the same to me.. the dermatologist who I saw in regards to my hives said the same.. but did go gluten free and honestly it didn’t do anything.. my antibodies were really high..
If your TSH is high and your T4 is normal. Then I’d definitely check your T3 level. Maybe you are not converting T4 to T3. Without T3 you will be very exhausted. It’s the only active hormone that’s used. T4 just sits and waits to be converted.
I too was very similar. Have you had your ferritin checked lately it need to be about 70. Or a full panel check.
I’m seeing the dr this morning. I’ve had loads of bloods done. As I’ve had a referral for a chronic fatigue specialist and they wanted everything checked to rule everything out.
Zelda123, everything you're saying about being stuck in the house is familiar to me. I've also been largely house bound. I've been sick since I was 34 and am now 40. It's very hard, and people who haven't been there have no idea what it feels like.
I found it useful to work on acceptance, and to try and figure out what I can and can't do without exhausting myself, and cut loads and loads of activities out. Meditation is also a huge help.
It sounds like you've been treated terribly by doctors and there's loads you should be getting treatment for but aren't. I would advise you to stick around this forum, and learn how to manage your own treatment. Start a folder with all the information you've got at the meant about your illness, then read a tiny bit every day.
When I first started I was far too ill to read books or journal articles, so I made sure I spent some time every day on the forum. I read loads of people's blood tests and the interpretations by knowledgeable members, and slowly it all started to sink in, and I could interpret the tests myself.
It sounds like you've got to make sure your thyroid hormone replacement is the right dose, and you can only do that by reading your own blood tests. There may be vitamin problems, particularly vitamin B12, which can be low due to an auto immune condition, and you can only figure that out by working through being tested and trying to supplement.
I'm quite a bit better now, from self medicating. I went from being in bed almost all day, and not being able to wash myself, prepare food, walk across a room, etc, to now being able to handle most of my self care, and do gentle activities in the house and enjoy myself a lot more.
Unfortunately doctors will often leave us to rot when there is a lot more that can be done.
It’s awful isn’t it what happens when the thyroid isn’t working like it should.. not enough awareness of all the things that can happen even after your been given treatment
Did you end up getting copies of your blood tests from the doctors?
The first step is to look at your thyroid panel and get to the bottom of where you are right now.
You need to see TSH, freeT4, freeT3, and both Hashimito and Graves antibodies.
Hashimotos are Thyroid peroxidase antibody (TPO or other abbreviations), Thyroglobulin antibody.
Graves I'm less familiar with, but I believe those are TSI and TRAB.
Vitamins would also be very useful to see, Ferritin, Folate, Vit B12 and Vit D.
Your doctor will probably have done only part of that. It's worth asking them straight out: "Was I diagnosed with Graves?". It sounds like its possible it was Hashimotos all along (this is the illness the destroys your thyroid slowly over time), as that can also make you appear overactive for short periods, it dumps extra hormone into the blood.
One option is to order private, mail order finger prick blood tests from Bluehorizon and Medichecks. They do several thyroid packages. If money is tight get the thyroid panel: TSH, freeT4 and freeT3. If you can afford it get antibodies and vitamins, too.
Another option is to request your whole medical record. I did this a few years ago and it cost £50. Pricey, but similar cost to buying your own tests. Rules have changed so it's possibly you can't be charged anymore. If you've had loads of tests and interventions over the years it can work out as good value!
I should have said: yes, its horrifying how negligent they are. I've got to the point where I'm not shocked by anything anymore. Thyroid illness is hugely misunderstood, and doctors are very cruel in the suffering they put people through
Full thyroid blood work as they send off for T2 and unless my thyroid is off according to the guidelines they won’t search for anything else.. so I’m
Going to have to have it done privately and then put my blood work on here.
What it was.. is when my thyroid went hyperthyroid they found graves antibodies. So they thought it was that. However I saw three thyroid specialists and one looked closer at my bloods and said I was over a thousand antibodies for Thyroiditis abs under 10 graves antibodies.
So he said it was autoimmune Thyroiditis that was slowly destroying my thyroid and dumping the thyroxine into my
Yea, it sounds like you're diagnosis is a bit more complex, and they are terrible at dealing with that.
I believe that if you had one positive antibody test for Graves this means that you have it, even if a test isn't positive again. Altho I may be wrong as I don't know much about Graves, that is how it works with Hashimotos antibodies, false negatives happen but not false positives. The antibodies sometimes fluctuate.
However, doctors are also confused. I've heard doctors saying Thyroglobulin antibody demonstrates Graves, but its not one of the two that prove it. So it's worth double checking somewhere down the path. But I'm not sure it's the first thing to worry about at the moment.
Its possible to have both Graves and Hashimotos at the same time. This can give quite a rocky road, and it comes up occasionally on the forums. You may be able to use the search to find other threads about it.
This paragraph is a description of Hashimotos: "So he said it was autoimmune Thyroiditis that was slowly destroying my thyroid and dumping the thyroxine into my blood causing toxicosis.". Doctors will often use the term autoimmune rather than Hashimotos.
If you're unlucky enough to have Hashimito flares - this is when extra hormone is dumped into your blood - there is no treatment as such. You just have to learn what symptoms you get when you start to have too much hormone, and ride it out. Going gluten or dairy free can help by reducing antibodies.
I think you're right to get private testing. Hopefully it will show some useful info and the forum can help you tune your dose and reduce symptoms.
You sound a lot like how I was. I didn't have Grave's but I was over medicated for over a year; close to 1 1/2 years which put a terrible strain on my adrenal glands and threw my whole HPA axis out of whack. As S.D. said, current lab work is needed but if your hypothalamus/pituitary/adrenal axis is not working properly the TSH will not be very accurate for dosing your thyroid medication which is one of the reasons why the full thyroid panel is needed as well as the other labs previously mentioned. There is definitely hope and you will not suffer forever but it's not a quick road to recovery either. There are some very helpful books you can read to better understand the state you're in. I highly recommend you spend some of your energy educating yourself about thyroid disease. It is helpful at doctor's appointments be fully armed with this knowledge. Stop The Thyroid Madness is a good start and if you're interested in further reading you can ask for other recommendations.
I would first try to check out any of the books I recommend from the library to see if you find them useful enough to buy. It can be very expensive to be sick. Start with "Stop The Thyroid Madness"-Janie Bowthorpe. Lots of information in her book and she has a website that is a great resource as well. Izabella Wentz is a pharmacist with Hashimoto that wrote "Root Cause" which is good as well. There is also a lot of information you can find online without having to spend a lot of money on books. Look up how the HPA axis works. It should be called the HPAT axis because it involves the thyroid. You'll also want to do some research on upregulation and down regulation of cells. It works kind of like insulin resistance in people with type 2 diabetes. They make insulin but the body no longer responds to it. This can happen with thyroid hormone as well which is one of the reason's people will have lab work within normal range and still have symptoms. Lab work can only tell you what is circulating in the blood, not what is being allowed into your cells. If it doesn't make it into the cells your body can't use it. Poor sleep, stress and nutritional deficiencies cause your body to malfunction at the cellular level. Mitochondria are responsible for cellular energy and ultimately your energy. People with Chronic Fatigue Syndrome have major issues with their mitochondria but you don't have to have CFS to have issues with your mitochondria. The largest concentration of mitochondria are in your brain and muscle. Resistance training builds muscle therefore increases your mitochondria but you have to be well enough to do resistance training. Because I don't want to completely overwhelm you, I will stop there and let you digest that much information. It has always helped me to understand what my body is doing in order for me to accept the symptoms that go along with it. It also helps me to be patient because I didn't get sick overnight so I can't expect to get well overnight. Good luck.
Thanks for the information, however I’m worried that if I go to my GP with this and want to find out all these levels in my body they will refuse. How can I find out ?
I'm in the US so I can order my own and take the results to a Naturopath. If you're in the UK, ask one of the others from the UK as I wouldn't be of any help in the workings of your healthcare system.
Resistance training fixed my fatigue. There are some recent studies on resistance training and TSH. I’ve stopped reading up on it now since the fatigue, muscle pain and brain fog have gone. I’ve also come off thyroxine and my TSH has been coming down over the last 2 years on it’s own. It could be something to try. You can do it at home. Best of luck!
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