I was wondering whether anyone could explain why, after several good days where I could get things done and felt happy, I woke up today feeling nauseous, lightheaded, with jaw locking and tired. Also, my diarrhea is back again!
Temperature at the start of treatment was 34.5 but had risen to 35.8 on average. Today I'm back to 34.7.
Also my brain has decided to go on strike. It's gone from fog to a pea-souper.....
I am on 100 levo and have been for 3 weeks having been diagnosed with quite severe Hashimoto's in April 21st this year. I started on 50 levo but it was raised to 100 due to symptoms being awful.
I'm taking D3 800mg as prescribed plus an a D3 spray with K2. I also take manganese malate capsules.
My B12 and Folate/Ferritin are fine.
I had thought that I was getting much better. I'm due a blood test next week.
Many thanks for any help you can give me.
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Sarfran
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Very common to start to feel worse as your body gets ready for next dose increase in levothyroxine
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
Ask GP to test thyroid antibodies if not been tested yet
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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)
Even if we don’t start on full replacement dose, (especially if extremely hypothyroid as you were) most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Thanks for the info, so helpful as ever. I have had a coeliac test which was negative, so that's a good thing.
The aches are back now but I'm going to slow down so that I feel better, even if it kills me 😂.
I was wondering whether Hashimoto's can affect any glands by the carotid artery. I ask because I have a tender swelling there. It's probably something else which has popped up just for fun.....
Have you had antibodies tested and confirmed as having Hashimoto’s?
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I do have confirmed Hashimoto's. I'm mentally preparing to remove gluten from my diet. It will be a struggle as I love my bran flakes, good quality bread and, of course, pasta. I also love baking. I'll just have to adapt. Thank you again.
You probably over did it. You felt good and happy for a few days so you did things and now you have slumped again. Next time you feel good, enjoy it, but don't do loads of things. It's a long slow process this. Conserve that good feeling.
Take heart from the fact that you know that you absorbing the medication and that you can feel well and just go slowly. This is most definitely a case of the tortoise winning.
I agree 100% with Fancypants, Dont push too hard , you will just get pushed back
It took you a long time to get this ill, so be gentle with yourself while your body gets used to functioning better. You will ,inevitably overdo it when you feel some energy, but try not to . Stop before you want to, Think 'happy tortoise' xx
I'm at a similar stage to you, I was diagnosed on the 24 April. My TSH was very high, T4 were low and vit D was low also. I am on 100mcg now.
A few days ago I also had a good spike and felt semi normal, what a feeling to get a little snippet of getting better, but then started to get worse again. I've been off work since mid March and have pretty much forgotten what normal is.
I have asked for another increase and have a blood test on Tuesday, I called the doctors Wednesday but unfortunately that was the earliest appointment. I tried a home kit from Medichecks but didn't have enough blood flow from fingers.
This is what happened to me after a couple of weeks on 50mcg, I had a few days of feeling better and then I got worse than ever, I was getting out of bed every day, but what an effort it was. It was like an out of body experience every day, days just went by in a blur.
I feel for you with the brain fog, if there was one symptom I could get rid of it would be that, bloody awful, nothing seems real.
I have been doing a lot of reading on hypothyroidism, I find this helps to know what we are up against, as you know this site is full of information. Think it makes life easier for you and your doctor when you can have a semi educated conversation with them and also less likely to get fobbed off later down the line. My doctor has been great so far, very supportive and really on the ball with it. But, we are in the fairly early stages at the minute and just trying to smash the numbers up and down to a more acceptable level. I plan to have the conversation with her soon about where in the ranges we are heading for, I know where I want them, I just hope she has the same plan🤷♂️🤞
Hope you are feeling as well as can be expected today, take care.
So, we are on our journey together. Maybe we should compare notes as we go!
I struggle with not 'doing' when I feel even a little more normal, let alone when I actually feel I'm human!
I am beginning to realise that my temperature might be an indicator for what the day holds. For example, yesterday and today in the 34s, rather low and I'm feeling ill. When I felt better it was up to high 35s and even got to 36.1! The excitement was almost too much...
Like you, my Doc has been grand so far, I just need to convince him to do FT3 as well as FT4. If he won't then I will go private for that.
He's quite a character with his jeans and high healed cowboy boots, I'm waiting for him to crack his whip and yell Yeehaa when I feel better 😂.
I'm wittering on here. You really don't have to read it all.
Today I've sent for a food allergy test as my stomach is rather alienated from me. If it's positive I'm going to carry on and have the 130+ foods tested and take the huge step (for greedy foodie me) of revamping my diet. Pray for me!
We'll make it through with the support and knowledge of the fabulous people on this forum.
Feel free to get in touch as you go through the journey.
Ah thanks for that, you too, get in touch anytime. Family and friends are great, but it is difficult to explain what you are going through with most of them, if not impossible with all but a few.
I know what you mean, I push pretty hard sometimes. I've always been a busy person and all this sitting around is no fun at all. I do wonder though whether the levo is just a cycle of ups and downs untill we find the right dose and whether if we are active or not you would still get the big dips after the highs. What I mean is, would you still be on your arse if you had sat and rested through the good points? Doesn't sound like me and you will find the answer to that question though, as soon as I get a glimmer of energy I've grabbed the hoover or found a field to walk in😂
I hope it goes well with the food tests, it does sound so daunting to have to change your diet. I know I would struggle with the gluten free, especially when I am working. My doctor has agreed to antibodies test on Tuesday and T3😮 so will maybe find out a bit more about my situation. I got ill with virus in March, I think the hypothyroidism had been coming a while, but the virus beat the last bit out of me i think.🤷♂️
Hope the cowboy is shooting from the hip next week and dishes you some more levo out🤞👍
Yes, I'm hoping that I have some free T3 to show when I get tested, definitely be a weight off knowing some good conversion is going on. I'm thinking though, that if we keep having good periods that some of the levo must be getting converted to FT3, hopefully a good sign.
My first blood test;
TSH 181 (0.6-3.6)
T4 <3.5 (8-14)
Second test
TSH 75
T4 8.8
Making progress, when I get tested next week it will be roughly six weeks since my first test and 3 weeks since my last.
Not much danger of doing to much today, I'm knackered, been glued to the chair most of the day. Are you struggling to sit still?😂
Wow! I was told on here that my results were bad and that I have severe Hypothyroidism, you must have been nearly dead!
I couldn't function before treatment, I literally had to pull myself up the stairs using the bannister! I really feel for you.
From what I've read on here I'd have thought that your FT4 would be lower with that TSH. Just goes to show how different we all are and how much I have to learn. I can understand why GPs aren't always so great with Thyroid problems.
I'm bored and doing nothing. I did go out, fill a watering can and water 4 pots but then felt positively ill and gave up. Pathetic 😂.
I'm now considering a binge watch of something utterly mindless as I can't focus on anything, not even reading, and the thought of cooking this evening is rather off-putting. However, no doubt I'll feel better by then, she says hopefully!
Have a good rest and remember the old cliché, tomorrow is another day.
Yeah, at least I know my pituitary gland is working ok😂, I have had some rough days, I know what you mean when you say you have to pull yourself up the stairs, everything is a massive effort when you're really low with it. I'm not sure what my T4 was on the first test, it just said < less than, I think 3.5 is the lowest that lab recorded them the doctor said. But, like you say, there is no two of us the same.
Yeah, same to you thanks Sarfran, keep soldiering on and hope you feel better soon.
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Increased Levo, now feel awful again
Levothyroxine Dose
Virus and hashimotos
Prescribed liothyrnonine today
